I apologize in advance to my subscribers who want to read something inspiring about motherhood, some description of the various roles we play, and/or a discussion about all the factors that lead so many of us to burnout. This will be a different sort of post, however, because I need to vent.

Recently, I have been following Elena Bridgers’ popular Substack, “Motherhood Until Yesterday.” She typically provides an interesting perspective by assessing our current motherhood situations and issues in the context of our evolutionary history as mammals and hunter-gatherers. I enjoy reading her discussions on how we evolved into these, our most challenging modern times.

However, I found her recent series about births – home births, inductions of labor, and more, to be triggering for me both personally and professionally. For example, I felt so many different emotions reading her accounts of home births, hospital births gone wrong, birthing centers, fetal head size mismatch to maternal pelvic width, scheduled inductions, and C-section rates.

How can I explain my emotional reactions to you? Simply put, all the birthing situations she discussed over the past month were my life. As a mother of three, I had one premature baby born by C-section at 36 weeks (after premature labor onset at 25 weeks), one full term repeat C-section, and one large for gestational age baby (10 lbs 2 oz) at 40 years of age, clearly advanced maternal age. The middle child born full-term had prior lung maturity studies done at 38 weeks - because I wanted to be delivered, nothing more - and she was found to be immature! My high-risk OB sent me home, unhappy, and said to come back when I was 40 weeks or in labor.

Despite my personal complicated obstetrical history, the clinical cases that I have seen and cared for in my professional life (as a neonatologist of 34 years) have been far more complex than my own.

What the pregnant mother wants (you may know this as a “birth plan”) is important yet often neglects the circumstances of what is best or necessary for mother and her baby. Here are some examples that impressed me greatly over the years:

• The home birth in which the mom developed severe post-partum hemorrhage and had to be transferred to a hospital for blood transfusions.

• The mother who arranged to have a tub birth in a well-staffed, popular birthing center, yet her baby ended up 95 degrees and moribund (close to death) with cold stress.

• The mother whose specific birth plan required that “nothing-but-breastmilk” be given to her baby after birth, however born at 37 weeks gestation, her early-term baby developed severe hypoglycemia (low blood sugar) unresponsive to oral glucose and required IV dextrose in the NICU.

• The RN mother who convinced her OB (also her actual employer) to perform a repeat C-section at 38 weeks gestation, and subsequently her baby boy required NICU care for six weeks for the most severe case of respiratory distress syndrome (due to her infant’s prematurity) we had seen in a decade.

This latter case prompted our hospital to review elective inductions and elective C-sections prior to 39 weeks gestation in 2008, and to discover that, as a result, there had been seventy-five babies admitted to our NICU for respiratory distress in one year (a high number among our 8,000 total deliveries). Our data describing iatrogenic respiratory distress syndrome contributed to a ground swell of concern among neonatologists in the U.S. that many (actual) premature babies were being delivered electively prior to 39 weeks gestation (many for the convenience of the mother or her doctor).

The 39-week rule.

That was the year preceding ACOG’s adoption of the “39-week rule,” in 2009. That “rule” has come under great scrutiny since then with many obstetrical researchers studying its effects on neonatal morbidity (generally down), neonatal mortality (generally the same) and stillbirths (maybe increased slightly). The “rule” does not fit well for babies with intrauterine growth restriction (small for gestational age) who often must be delivered earlier.

In her recent article on elective induction at 39 weeks actually decreasing the C-section rate, Elena Bridgers sites the ARRIVE study published in 2018 which found that when 3,062 women with their first pregnancy were randomly assigned to be induced at 39 weeks, there was a lower 4.3% rate of fetal death or severe neonatal complication, and a lower 18.6% C-section rate. In that study, first time moms who were randomized to expectant management had a higher, 22% C-section rate, and their babies a higher 5.4% rate of fetal death or severe neonatal complication. Many thought that this study proved that elective induction at 39 weeks was safe and effective.

Based on this one randomized trial, Eleana Bridgers concluded that “if it’s your first birth, outcomes are actually slightly better if you induce at 39 weeks.” The ARRIVE study was conducted by the NICHD and 18 academic medical centers, which probably explains the very low C-section rates.

A subsequent study published in 2019 compiled data from 6 large observational studies and found similarly a lower C-section rate of 26% and a low peripartum infection rate of 2.8% among 66,000 women induced at 39 weeks. The 584,000 women delivered with expectant management had a higher 29% C-section rate and a high peripartum infection rate of 5.2%. In the induction group, neonatal rates of respiratory morbidity and NICU admission were lower. Moreover, the perinatal mortality (death) rates were lower 0.04% (vs. 0.2%) in the induction group. These data are from non-academic centers, mostly private practices, so the higher 29% C-section rate is more typical of the U.S. in general.

Perusing Pub Med, the NLM and NIH database where all published biomedical and health literature are indexed, I found many other large studies and/or meta-analyses (studies of multiple large studies), looking at the “39-week rule” which found additional concerning outcomes.

The 39 week rule: neonatal and fetal outcomes.

The ARRIVE study that Elena wrote about is not the final answer. In 2016 a retrospective study of all U.S. births from 45 states and D.C, comparing time periods 2007-2009 to 2011-2013, it was determined that the 39-week rule did, in fact, decrease deliveries at 37 and 38 weeks gestation, and increased those at 39-40 weeks. However, the stillbirth rate increased from 0.110% to 0.1170% during those time periods.

In 2017, a study examining 55% of births in the U.S. (from 23 states) during the period 2010-2014 examined the effect of the 39-week rule on high-risk pregnancy deliveries. The new 39-week rule, as expected, decreased deliveries at 38 weeks gestation by 2.5% and increased those at 39 weeks gestation by 2.3% among low-risk pregnancies and had a similar effect among high-risk pregnancies. For the high-risk population, NICU admissions increased from 5.4 to 6.3% in 2014 and assisted ventilation rates declined from 3.8 to 2.9%. This study found no increase in the rate of stillbirth (0.23% in 2010 and 0.23% in 2014).

A large study from Australia published in 2023 examined 948,000 pregnancies and birth outcomes between 2000-2018 and sought to answer whether the 39-week rule affected rates of neonatal mortality and severe neonatal morbidity for babies born 37 to 39 weeks gestation. They found increased neonatal mortality and morbidity for intrauterine growth restricted (IUGR) fetuses (those with weight below the 10%ile and those below the 3%ile for growth). Rates of stillbirth increased with gestational age, with the highest rate observed in infants with birthweight below the 3%ile. Neonatal mortality was highest at the lowest centiles of growth, and at 37 weeks gestation, so for these groups the 39-week rule may not apply.

My review of medical literature reassured me that the picture of when and how to deliver the first-time pregnant mom is complex. Maternal complications happen; fetuses do not grow well for any number of reasons. Childbirth is a complex medical issue, one that requires an obstetrician and/or a certified nurse midwife to manage. It is not as simple as elective induction at 39 weeks is best.

The Pitt series highlights maternal wishes for a “free birth.”

I loved the finale of The Pitt’s second season since the pregnant woman who came in with preeclampsia progressing to eclampsia wanted a “free birth,” i.e. no medical care. But for the ED staff performing an emergency C-section, she and her baby would have died after she began having a prolonged seizure. The moral of that story – one that I have witnessed thousands of times in my clinical practice - is that what the mother wants is not always in the best interest of having a healthy baby.

Women do not get pregnant to be pregnant. They get pregnant to have a baby, and this is the problem with saying that mothers are entitled to a stress-free, perfect vaginal delivery. (I have never had one, but I have attended hundreds.) More often, however, I attended births that were planned to occur a certain, perfect way and some complication arose – either with the mother (hypertension, gestational diabetes, pre-eclampsia, abruption, chorioamnionitis, HEELP syndrome, etc.) or the baby – usually significant fetal distress.

The delivering physician or mid-wife is making decisions based on the welfare of both patients. The mother is a big girl - and the baby is helpless - in their ability to deal with these changing circumstances.

I am advocating for mothers to recognize the need to surrender to what their body needs and deal with a C-section or assisted vaginal delivery, if necessary. Moreover, I am advocating for pregnant women to think about the possibility of delivering a dead baby when they do not access proper medical care.

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Five Key Takeaways

1. Childbirth is medically complex - not ideological

Labor and delivery decisions cannot be reduced to slogans about “natural birth,” avoiding interventions, or rigid birth plans. Obstetric care requires constant reassessment of risks to both mother and baby.

2. The “39-week rule” improved some outcomes but is not universally applicable

Delaying elective deliveries until 39 weeks reduced neonatal respiratory distress and NICU admissions in many healthy pregnancies, but newer studies suggest the rule may not fit high-risk pregnancies, especially fetuses with intrauterine growth restriction (IUGR).

3. The ARRIVE trial is influential - but not the final word

Oversimplified interpretations of the 2018 ARRIVE trial are incomplete - while induction at 39 weeks lowered C-section rates in that study, later observational research revealed more nuanced outcomes involving stillbirth risk, NICU admissions, and maternal complications.

4. Birth plans can conflict with medical realities

Rigid expectations about home birth, “nothing but breastmilk,” or avoiding intervention sometimes leads to severe complications for mothers and babies. A central argument is that flexibility and medical judgment are essential during labor.

5. The ultimate goal of pregnancy is a healthy mother and baby

Childbirth is not a performance or idealized experience - it is a high-stakes medical event. Sometimes interventions like induction, assisted delivery, or C-section are necessary to prevent tragedy.

Emily was born to highly educated, talented parents - her mother was a lawyer and her father a theoretical chemist. She was a much wanted and planned pregnancy. Her older sister was seven years old.

When I arrived in the delivery room, Emily was blue and struggling to breathe despite receiving some oxygen. After quickly examining her, I noted her bell-shaped chest, her deep chest retractions, poor breath sounds, and her protuberant abdomen which contained easily palpable, large cystic kidneys. They felt like two huge, hard bunches of grapes. This beautiful little girl proved to have infantile polycystic kidney disease. IPKD is a rare genetic disorder affecting one in 20,000 children.

After Emily was intubated and supported on mechanical ventilation, we transported her to the NICU and inserted chest tubes on both sides to decompress the air that had accumulated in her chest and was compressing her diseased lungs.

Thankfully, her pulmonary hypoplasia - lung underdevelopment - was not life-threatening. However, her kidney ultrasound confirmed bilateral polycystic kidneys. Because her kidneys’ had produced urine in utero, which in turn produced adequate amniotic fluid throughout the pregnancy, her lungs were only partially underdeveloped. Her chest tubes were removed within the first week, and she was easily weaned off the ventilator during her second week. Her lungs healed completely.

Although Emily continued to produce large volumes of urine during her first few weeks, her kidneys did not function effectively and soon she was in kidney failure. Serendipitously, my husband served as her pediatric nephrologist, and we experienced many difficult and different emotions while working together to provide Emily’s care. For us it was a challenging and thought-provoking situation.

Early on, her parents were, understandably, still reeling from her diagnosis. IPKD causes severe kidney failure and leads to dialysis and ultimately the need for kidney transplantation. Liver scarring is present at birth, but abnormal liver function does not occur until later in childhood. During her first month, her parents slowly adjusted to her diagnosis and her care needs. Within a few weeks Emily began peritoneal dialysis, through a catheter entering her abdominal cavity.

The dialysis machine cycled fluid into and out of her abdomen to remove chemicals and toxins that built up in the absence of proper kidney function. Her father, a brilliant chemist and university professor, would sit by her side and study the dialysis machine, its settings and functioning. Paul was a tall, handsome man who was typically quiet, although he seemed to enjoy talking with the pediatric residents about the machine settings and how dialysis works.

Emily’s mother, Joanie, was an attractive, tall and thin woman who continually looked despondent and seemed always to be on the verge of tears, quite understandably so. She expressed breastmilk for her baby’s nutritional support and proceeded to cope with having a chronically hospitalized baby, another child at home, and a full-time career.

Most days when Joanie came in and out of the NICU to see Emily, she looked haggard. However, we always enjoyed talking about breastfeeding and any struggles she encountered while pumping her breastmilk. As I answered her questions daily, I also commented on how cute Emily was, and that invariably made her smile.

Unlike a lot of other chronically ill babies, her daughter had a truly sweet temperament, and I enjoyed pointing this out to her mother. Years later, Joanie recollected in an interview about her experience that I “was the one who got them thinking of Emily as a person.” During that period in my life, having two small children of my own, I didn’t have enough free time to get to know Joanie very well, or to support her more fully. But my husband did.

Emily’s parents were agreeable, intelligent, and levelheaded. Sometimes I found it painful to watch them handle everything that happened to their daughter so courageously. Perhaps my husband and I identified with them a little too much. I often wondered if, in the same situation, I would be as calm as Emily’s mother was.

Emily went home from the hospital on peritoneal dialysis when she was a few months old. My husband continued to direct her care. In the interim, she required several readmissions to the hospital for various problems.

Blood type and various other histocompatibility markers were studied among her family members, and it was determined that Emily and her grandmother were a perfect match. When she was only two years old, Emily received a kidney transplant, a miraculous gift from her sixty-year-old maternal grandmother. Theirs became a tremendous success story for our children’s hospital kidney transplant program.

After my family moved away from Houston when Emily was four, Joanie and I wrote to each other and maintained contact. Later on, my husband saw Emily in the summer when she, like many other “kidney kids,” attended Camp Okawehna in Tennessee each year. Camp O was an overnight camp in the piney woods outside of Nashville, TN. These kidney dialysis children attended camp as a group, and each June, my husband and the dialysis nurses shepherded a large contingency of patients, nurses, dieticians, social workers, and physicians to attend the camp for one week.

All the children at Camp O were either on peritoneal dialysis, hemodialysis, or had been already transplanted. Emily attended camp each summer for many years, from about age eight onward. Like all the other kids there, she played with other children just like her and she felt normal. These “kidney kids,” as they were lovingly called, all had lines and tubes sticking out of them, and they all had scars from previous surgeries. Most were very short, having had poor growth for many years, but they still loved normal child-like activities - running, playing, kicking, throwing, competing, swimming, making craft items, and performing in talent shows. They even enjoyed a prom night. The Junior League of Nashville brought in used prom dresses and had them fitted for the girls to wear!

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I continued to correspond with Emily’s mom for many years. We exchanged Christmas cards, family pictures, and personal letters. It was inspiring to watch her parents become champions and activists for organ transplantation. However, Emily’s life was not easy by any estimation. Throughout her childhood, she demonstrated enormous courage in overcoming some serious complications, infections, and hospitalizations, but Emily never rejected her grandmother’s kidney. She was growing into a happy teenager when her liver function began to deteriorate.

Emily’s family remained strong and loving. From the time she was eight years old, her parents and big sister lived on campus and served as student counselors at a local university. As a result, Emily grew up keen on learning. She was a good student herself and, despite all that she had gone through, she was praised by her teachers for her strong mind, her wit, and her sense of humor.

Despite her chronic illness, Emily loved life and grew to be fiercely independent. She performed in musical theater, played tennis, and hiked in the Colorado Mountains with her family each summer. At home, she enjoyed playing guitar and composing songs. Emily continued to do well in school and ultimately attended a small college in Texas. She was there for two years before her untimely and tragic death at age twenty. 

To this day, Emily’s mother continues to raise money for Polycystic Kidney Disease research, and she served on the board of the International Polycystic Kidney Disease Foundation for many years. Both Joanie and Paul served as advocates for organ donation in Texas for quite some time.

All throughout my career, my husband and I received profound gifts from knowing special people like Paul and Joanie, extraordinary parents who settled close by our sickest patients and slowly revealed their loving and caring character. Knowing them and their little girl was truly a blessing.

In the U.S., we celebrate National Donate Life Month in April each year, and Living Donor Day is the first Sunday in April. April 19-25 is National Pediatric Transplant Week, dedicated to children in need of transplants.

More than 115,000 people are currently waiting for a life-saving organ transplant in the U.S. You can register to be a donor at RegisterMe.org or through the Donate Life America website.

Emily’s story is an excerpt from my memoir, “So Many Babies,” which you can access here.

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Geriatric means old and elderly, and the term generally refers to aging people in their 60s and older. Women over 35 who become pregnant are consider…

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Both little girls were placed on ventilatory support and whisked away to the NICU. We inserted catheters into their umbilicus (belly button) to provide fluids and nutrition, and to monitor lab values; then we covered them with plastic blankets to prevent heat and fluid loss. Twin A was much sicker than her sister because of severe pneumonia and sepsis (a blood stream infection). She had very low blood pressure and was dusky, pale, and minimally responsive.

From the start, twin B settled into her new environment on lower ventilator settings. She had bright red, thin skin, downy hair on her wrinkled forehead, barely visible blonde eyebrows, and fused eyelids. Her nose and lips were perfectly formed, but her ears were floppy and folded in on themselves. Her head seemed disproportionately large for her scrawny little body. She had tiny fingers with barely visible nails, and veins could be seen beneath her translucent skin all over her body. Twin B did not appear to have active infection.

I updated the girls’ parents in mother’s room that first night to describe how critically unstable twin A was. They were shocked but expressed appreciation for all our efforts to save their twins. I described the treatments each baby received and each girl’s chances of survival. Quite typical for parents who experience IVF to conceive, this couple seemed desperate for their little girls.

Twin B remained stable, furrowed her brow, and squirmed around in response to stimulation, while her sister deteriorated throughout their first day. Despite our efforts to support her, twin A languished and died later on her second day of life. I dreaded giving her parents this news. Twin B’s blood cultures grew Group B Streptococcus, so I could explain that the reason for the girls’ premature delivery and twin A’s rapid demise was probably Group B strep chorioamnionitis (a uterine infection). The twins’ parents were extremely sad to lose one daughter, but seemed optimistic about twin B, who they named Janie.

The surviving sister turned out to be a little fighter and was unusually active and responsive for a preemie at 24 weeks gestation. She often wiggled around in her warming bed and seemed to enjoy sucking on her miniature pacifier. As her ventilator settings were weaned down, I began to feel optimistic about her chances and continued to update her parents daily.

Janie continued to do well and tolerated small feedings, drops of her mother’s breastmilk, until she developed a patent ductus arteriosus, or PDA. This is a common complication of prematurity, a blood vessel opening near the heart that floods the lungs with blood. We treated this with a medicine called indomethacin, one that usually closes the open ductus, but in this case several doses of the medicine did not work effectively. Her PDA continued to flood her lungs with blood, and she needed surgical ligation of her PDA. As her parents adjusted to this concerning PDA diagnosis and her need for urgent surgery, I grew to like them for their constant, calm presence and their positivity.

Janie’s mother sat by her bedside with a hand gently resting on her daughter’s arm or leg throughout most of every day. The surgical procedure, a PDA ligation, was performed in the NICU and was successful. After surgery, Janie grew stronger, tolerated her feedings, and again began to wean off her vent settings.

Dad returned to work, but Janie’s mom remained nearby her baby’s incubator each day. She was always in the NICU. We talked daily about her daughter’s labs, exams, and progress. At three weeks of age, when she was nearly ready to come off the ventilator, she took a turn for the worse by developing pneumonia. That caused her to retreat to needing higher oxygen and ventilator support. I was discouraged by this complication, and I allowed her mother to see my disappointment. I remember not wanting to give her false hope since we were dealing with yet another complication requiring more medications. Nevertheless, this mother remained optimistic.

Janie was one of my sickest NICU patients for some time, and as she slowly improved she needed NICU care for four more months. One day, her mother asked me, bluntly, “Is she going to make it?” Standing at her bedside, I paused and took a slow, deep breath. Then I answered, “Probably. Most preemies as small as she is who survive for the first month tend to survive overall.” Mom nodded her head in understanding, even as I reminded her that she still had much to overcome. That day we also talked about her developing chronic lung disease, or bronchopulmonary dysplasia, a complication seen in the most premature babies who were supported on oxygen and a ventilator during their first month of life.

At six weeks of age, Janie developed early signs of retinopathy of prematurity, or ROP, another complication of prematurity, this one related to immature retinae and oxygen exposure. Unfortunately, Janie’s ROP progressed to a severe stage, and at eight weeks of age she required cryosurgery on her retinae, a procedure to prevent retinal detachment. Thank goodness, her ROP stabilized, and her retinas did not detach. This meant that she would not go blind. (Janie did end up with poor vision and wear Coke-bottle-thick glasses for a long time before she could be fitted with contact lenses at age three.)

Because her mother was so pleasant, I truly enjoyed caring for Janie, even though the baby herself provided plenty of real clinical challenges. Janie slowly weaned off the ventilator during her third and fourth months, and when she was at a corrected age of 40 weeks gestation, essentially full-term, she was ready to be extubated (removed from the vent). That morning, both mom and I were excited, almost giddy, to see her finally extubated, and we were both relieved that she tolerated her extubation very well. However, a few days later, I noticed that she had a hoarse cry. I felt disheartened at this - knowing the most likely cause - and I dreaded having to explain to her mother that one of her vocal cords was paralyzed (most likely a complication of the earlier PDA surgery.)

Janie also developed some rib fractures resulting from poor bone mineralization. Several decades ago, we were still learning how to properly use mothers’ own breastmilk for adequate nutrition in extremely preterm babies. Janie was fed exclusively her mother’s own milk, but because of the milk’s inherently low protein and mineral content (and less than adequate milk fortifiers available to us at that time) she received inadequate protein, calcium, and phosphorus intake. At that time, there was a clinical trial being conducted at Texas Childrens’ Hospital, and her mother agreed unselfishly to enroll her daughter into that trial of bone density, human milk fortifier, and breastmilk feedings.

Although Belinda’s daughter suffered through many complications, severe chronic lung disease, retinopathy of prematurity, rib fractures, and two surgeries, she was always pleasant and extremely tolerant of her daughter’s many ups and downs. She had a smile for everyone and often complimented the nurses’ work. She listened carefully and asked lots of questions. Belinda had chosen to be present for her daughter and her caregivers.

In retrospect, there were days when something went wrong with her baby, and I felt defeated. Those days, when I was discouraged and struggling to stay upbeat about her daughter, Belinda kept a positive attitude, and she supported me.

There was never a time that I did not enjoy talking with Janie’s mom, and over all those months in the NICU, I grew fond of both her and her daughter. Belinda and I shared a vision of Janie’s ultimate wellbeing as a personal triumph. She had survived everything her young life threw at her. And through it all, to me it was a great honor to connect so deeply with this one exceptional mother in the NICU.

Long after Janie had been discharged home, her mom kept in touch with me by sending little notes and pictures of her daughter. When I moved away from Houston, she continued to update me by mail. And after I moved to Austin many years later, this clever and committed mother located me so that she could reintroduce me to her grown daughter. We three met in a quiet cafe in Austin. Janie was a beautiful young woman, somewhat shy, but she appeared happy. I could tell that she adored her mother.

In high school, Janie had played trumpet in the band. Even though she had a scratchy, hoarse voice (from that paralyzed vocal cord), she was incredibly talented with the trumpet. That fall, Janie entered the University of Texas at Austin as a freshman. She did well in school there, loved playing in the Longhorn Band for three years, and she learned fencing épée, a complicated and challenging sport.

She graduated from Ut Austin in 2009 with a degree in Radio, TV, and Film. Her mother was delighted and proud of her daughter then, just as she had been during those first weeks and months in the NICU. During all those years, Janie’s mom continued to work as a clinical psychologist, and she often volunteered with Child Protective Services in the small Texas town where they lived.

After Janie graduated from college, and while writing my memoir, I contacted Belinda again - to ask her if her daughter’s personality might have been affected by all the NICU pain that she endured. She reminisced that as she witnessed the invasiveness of the tests and support that kept Janie alive in the NICU, she wondered what the ramifications of those experiences would be. She remembered that “while the ‘mother’ side of her rejoiced that she was still alive day after day, the ‘psychologist’ side of her worried about what the effects would be.”

She said, “I hoped my presence would help mitigate her painful experiences, and I tried to spend time by Janie’s side every day and hold her tiny hand, arm, or leg until we were finally allowed to hold her completely when she was several weeks old.”

Undoubtedly, Belinda’s attitude and her constant presence made a huge difference in Janie’s life. I felt honored that she shared those intimate feelings with me, and that she had allowed me the privilege and trust of caring for her daughter all those years ago.

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I attended the delivery of her twins. Each of her babies weighed less than one pound five ounces at birth. Both little girls were placed on ventilatory support and whisked away to the NICU. We inserted catheters into their umbilicus (belly button) to provide fluids and nutrition, and to monitor lab values; then we covered them with plastic blankets to prevent heat and fluid loss.

Twin A was much sicker than her sister because of severe pneumonia and sepsis (a blood stream infection). She had very low blood pressure and was dusky, pale, and minimally responsive. From the start, twin B settled into her new environment on lower ventilator settings. She had bright red, thin skin, downy hair on her wrinkled forehead, barely visible blonde eyebrows, and fused eyelids. Her nose and lips were perfectly formed, but her ears were floppy and folded in on themselves. Her head seemed disproportionately large for her scrawny little body. She had tiny fingers with barely visible nails, and veins could be seen beneath her translucent skin all over her body. Twin B did not appear to have active infection.

I updated the girls’ parents in mother’s room that first night to describe how critically unstable twin A was. They were shocked but expressed appreciation for all our efforts to save their twins. I described the treatments each baby received and each girl’s chances of survival. Just like other IVF parents, this couple desperately hoped for their little girls to survive.

Twin B remained stable, furrowed her brow, and squirmed around in response to stimulation, while her sister deteriorated throughout their first day. Twin A languished and died later on her second day of life. I dreaded giving her parents this news. Twin B’s blood cultures grew Group B Streptococcus, so I could explain that the reason for the girls’ premature delivery and twin A’s rapid demise was probably Group B strep chorioamnionitis (a uterine infection). This couple was extremely sad to lose one daughter, but seemed optimistic about twin B, who they named Janie.

The surviving sister turned out to be a little fighter and was unusually active and responsive for a preemie at 24 weeks gestation. She often wiggled around in her warming bed and seemed to enjoy sucking on her miniature pacifier. As her ventilator settings were weaned down, I began to feel optimistic about her chances and continued to update her parents daily.

Janie continued to do well and tolerated small feedings, drops of her mother’s breastmilk, until she developed a patent ductus arteriosus, or PDA. This is a common complication of prematurity, a blood vessel opening near the heart that floods the lungs with blood. We treated this with a medicine called indomethacin, one that usually closes the open ductus, but in this case several doses of the medicine did not work. Her PDA continued to flood her lungs with blood, and she needed surgical ligation of her PDA. As her parents adjusted to the new PDA diagnosis and her need for urgent surgery, I grew to appreciate their constant, calm presence and their positivity.

Janie’s mother sat by her bedside with a hand gently resting on her daughter’s arm or leg throughout most of every day. The surgical procedure was performed in the NICU and was successful. After surgery, Janie grew stronger, tolerated her feedings, and again began to wean off her vent settings. Dad returned to work, but Janie’s mom remained nearby her baby’s incubator each day.

She was always in the NICU. We talked daily about her daughter’s labs, exams, and progress. At three weeks of age, when she was almost ready to come off the ventilator, she took a turn for the worse by developing pneumonia. That caused her to retreat to higher oxygen and vent settings for support. I was discouraged by this complication, and I allowed her mother to see my disappointment. I remember not wanting to give her false hope since we were dealing with yet another complication requiring more medications. Nevertheless, her mother remained optimistic.

Janie was one of my sickest NICU patients for a while, and then she began to improve. However, she stayed in the NICU for four more months. One day, her mother asked me, “Is she going to make it?” Standing at her bedside, I paused and took a slow, deep breath. Then I answered, “Probably. Most preemies as small as she is who survive for the first month tend to survive overall.” Beverly nodded her head in understanding, even as I reminded her that she still had much to overcome. In anticipation, we talked about her developing chronic lung disease, or bronchopulmonary dysplasia, a complication of premature babies who were supported on oxygen and a ventilator during their first month of life.

At six weeks of age, Janie developed early signs of retinopathy of prematurity, or ROP, another complication of prematurity, one related to immature retinae and oxygen exposure. Janie’s ROP progressed to a severe stage, however, and at eight weeks of age she required cryosurgery on her retinae, a procedure to prevent retinal detachment. Thank goodness, her ROP stabilized, and her retinas did not detach, which meant she would not go blind. (Janie would end up with poor vision and wear thick glasses for a long time before she could be fitted with contact lenses at age three years.)

Because her mother was so pleasant, I enjoyed caring for Janie, even though the baby herself was full of clinical challenges. Janie slowly weaned off the ventilator during her third and fourth months. When she was at a corrected age of 40 weeks gestation, essentially full-term, she was ready to be extubated or taken off the vent. That morning, both mom and I were excited, almost giddy, to see her finally extubated. Of course, we were both relieved that she tolerated her extubation. However, a few days later, I noticed her hoarse cry. I felt disheartened at knowing the most likely cause and dreaded having to explain to her mother that one of her vocal cords was paralyzed (most likely a complication of the earlier PDA surgery.)

Janie also developed some rib fractures resulting from poor bone mineralization. Back then in the 1980’s, we were still learning how to properly use mothers’ own breastmilk for adequate nutrition in extremely preterm babies. Janie was fed exclusively her mother’s own milk, but because of the milk’s inherently low protein and mineral levels (and less than adequate milk fortifiers available to us at that time) she received inadequate protein, calcium, and phosphorus intake. There was a clinical trial going on and her mother agreed unselfishly to enroll her daughter into that trial of bone density, human milk fortifier, and breastmilk feedings.

Although her daughter suffered through many complications, severe chronic lung disease, retinopathy of prematurity, rib fractures, and two surgeries, Beverly was always pleasant and extremely tolerant of her daughter’s ups and downs. She had a smile for everyone and often complimented the nurses’ work. She listened carefully and asked lots of questions. She had chosen to be present for her daughter and her caregivers. In retrospect, there were days when something went wrong with her baby, and I felt defeated. Some days, when I was discouraged and struggling to stay upbeat about her daughter, Beverly kept a positive attitude, and she supported me.

There was never a time that I did not enjoy talking with Janie’s mom, and throughout all those months in the NICU, I grew fond of both her and her daughter. Beverly and I shared a vision of Janie’s ultimate wellbeing as her personal triumph. She had survived everything her young life threw at her. I considered it to be a great honor to connect so deeply with this one exceptional mother in the NICU.

Long after Janie was finally discharged home, her mom kept in touch with me by sending little notes and pictures of her daughter. When I moved away from Houston, she continued to update me by mail. And after I moved to Austin many years later, this clever and committed mother located me so that she could reintroduce me to her grown daughter. We all met together in a cafe in Austin, and I found Janie to be an attractive and outgoing young woman. How wonderful!

In high school, Janie had played trumpet in the band. Even though she had a scratchy, hoarse voice, she was incredibly talented with the trumpet. That fall, Janie entered the University of Texas at Austin as a freshman. She did well in school there, loved playing in the Longhorn Band for three years, and she learned fencing épée, a complicated and challenging sport. She graduated in 2009 with a degree in Radio, TV, and Film. Her mother was delighted and proud of her daughter then, just as she had been during those first weeks and months in the NICU. Janie’s mom continued to work as a clinical psychologist, and she often volunteered with Child Protective Services for many years in the small town where they lived.

After Janie graduated from college, and while writing my memoir, I contacted Beverly to ask her if her daughter’s personality might have been affected by all the NICU pain that she endured. She reminisced that as she witnessed the invasiveness of the tests and support that kept Janie alive in the NICU, she wondered what the ramifications of those experiences would be. She remembered that “while the ‘mother’ side of her rejoiced that she was still alive day after day, the ‘psychologist’ side of her worried about what the effects would be.” She told me, “I hoped my presence would help mitigate her painful experiences, and I tried to spend time by Janie’s side every day and hold her tiny hand, arm, or leg until we were finally allowed to hold her completely (which was not until she was several weeks old).”

Undoubtedly, this mother’s presence made a huge difference in this young lady’s life. I felt honored that she shared those intimate feelings with me, and that she had allowed me the privilege of caring for her daughter all those years ago.

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Thirty-six hours after mom’s admission to the hospital, baby A began to have heart rate decelerations and her doctors recommended delivery. Jennifer’s babies were delivered by C-section. Baby A weighed 930 grams (2 pounds), Baby B weighed 750 grams (1.6 pounds), and baby C arrived weighing a whopping 1,100 grams (2.4 pounds).

I was the lucky neonatologist who attended this delivery and cared for them during their NICU stay. Each infant was born quite responsive and each was intubated and placed on mechanical ventilation. Shortly after birth they were each given artificial surfactant directly into their lungs.

Baby A, whom they called Allison, responded well to the surfactant and was stablized on low ventilator settings. Baby B, whom they named Fern, struggled to breathe despite maximal respiratory support. After her dose of surfactant, Baby C, whom they called Caroline, was pink on minimal ventilator support and extubated to nasal CPAP, where she continued to breathe entirely on her own. 

The girls received routine intravenous nutrition, and once mom had produced some expressed breastmilk - colostrum - they were all fed mom’s milk. Their breast milk feedings were advanced slowly and surely. Jennifer visited the NICU to see her daughters as soon as possible, and she continued to visit her girls daily while they were in the NICU. She was typically present for several hours each day.

Most days Jennifer held two of her babies skin-to-skin, sometimes called “kangaroo care,” which encouraged their growth, minimized their apnea, and decreased their chances of infection. Holding each baby separately took several hours, but Jennifer enjoyed this intimate reprieve. For several weeks, their mother’s breastmilk was fortified with protein, calories, electrolyes, vitamins, and minerals. Allison and Caroline gained weight well, and Allison was quickly weaned off the ventilator to nasal CPAP support, just like Caroline. All three girls had normal head ultrasounds, a screening test for any possible intracranial hemorrhage, a common complication of extreme prematurity.

Fern continued to struggle with severe respiratory distress and pulmonary hypertension. For several weeks she required maximal ventilatory support, while her sisters thrived. 

Both Jennifer and Jeff visited their girls every day. Mom usually stood at their bedside talking, stroking, and singing to her daughters. Dad often sat nearby reading his Wall Street Journal. One day, unexpectedly, while her mother was visiting, Allison developed a severe heart arrhythmia. Her erratic heart rate caused her to go into shock, and for this she required cardioversion. Her mother stood twenty feet away watching as our NICU team stabilized her daughter. Allison had a structurally normal heart and, subsequently, was treated with a medication that controlled her heart rhythm nicely. 

Caroline grew and thrived without any complications. She had mild apnea of prematurity, which resolved. However, little Fern continued to struggle and required intravenous steroids in order to be weaned off the ventilator - at seven weeks of age! This treatment was not without risks for further complications, specifically an increase in cerebral palsy. Her brave parents chose to take the risks and treat Fern with life-saving steroids. The medication worked and Fern was extubated shortly thereafter. Jennifer held all three of her daughters together on a large fluffy pillow at eight weeks after their birth.

Fern’s CT scan of her brain at 38 weeks corrected age showed no evidence of periventricular leukomalcia (one harbinger of cerebral palsy). All of us - parents and NICU staff - were relieved at this great news!

The triplets’ mother visited every day during her daughters’ stay. In her spare time she assisted the NICU staff in creating a nursing mothers’ support group. Jennifer was lucky to have a great breastmilk supply, enough for all three girls. (Some moms are high milk volume producers.) Her presence in the weekly support group encouraged other mothers to join the NICU nurses and Lactation Consultant and support one another to establish and maintain an adequate breastmilk supply for their sick babies.

Allison and Caroline were ready for discharge by 39 weeks corrected age (very near their due date), long before their sister, Fern, was ready. Mom took this in stride and continued to visit Fern daily until she was ready to go home on a small amount of oxygen through a nasal cannula at 42 weeks corrected age.

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Four years after her girls were sent home from the NICU, Jennifer helped to arrange a fundraising luncheon “baby shower” to raise money for Hand to Hold, a national nonprofit organization that provides NICU parents with peer support from seasoned NICU parents who have been trained to help other NICU parents while their baby is in the hospital. Jennifer’s “baby shower” raised over $100,000 for this wonderful organization.

Jennifer said that she chaired the fundraiser “because of what I went through. I handled it poorly and I wanted other preemie moms to know that they don’t have to feel lost.” She went on the say that “Hand to Hold can help them feel hopeful, connected, and give them the support I didn’t have.”

This year, each of these girls headed off to college as freshman, having chosen to enroll at three different universities. I was privileged to write a letter of recommendation for Allison for my sorority at my own alma mater. Isn’t that something?

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I will never forget the morning Carol was admitted to Labor and Delivery in my hospital for delivery of her second child. Her pregnancy had been uneventful, and her labor was going smoothly. I was paged to come down to see her newborn son. When I walked in the door, I saw her baby laying quietly on the warming bed—pink in room air, breathing well, and kicking around. Sitting up in her bed she said, “Suze, he’s a little floppy, can you check him out?” As I assessed him, I noted his undeniable features of Down syndrome – slanted eyes, flattened nose and midface, protruding tongue, distinctive ears, palmer creases, and clinodactyly (characteristic incurving) of both little fingers.

Carol heard me sigh, confirming what she already suspected. I quietly but honestly informed her of my concerns, and then added, “There is no heart murmur, so that’s good. We’ll get an echocardiogram today to make sure he doesn’t have congenital heart disease (CHD). Then we’ll see what the chromosomes say.” Of course, she was heartbroken and started to cry. Feeling miserable myself, I gave her a hug and told her, “Try not to worry, Carol. We’ll take care of everything he needs.”

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Thankfully, an echocardiogram (heart ultrasound) performed later that day revealed no congenital heart defect. Two days later, the DNA analysis confirmed Andrew’s chromosomal abnormality as Trisomy 21. When I told Carol the news, she cried some more. As I sat with her, I still felt miserable. After his birth, Andrew lost too much weight and became jaundiced because of poor breastfeeding. Babies with Down syndrome are notoriously ineffective at nursing because of a weak suck and swallow, and poor tone in the muscles of their head and neck.

Carol was determined to breastfeed him and learned to use a silicone nipple shield to assist his poor latch. In addition, she used a feeding tube to supplement nursing with her expressed breastmilk. Carol was incredibly patient with him, and by ten days of age he learned to nurse well enough to gain weight and go home. Carol stayed home with Andrew for three months, and when she returned to work, she seemed optimistic. All the staff were relieved that she appeared to be taking his diagnosis in stride.

Not quite one month back from her maternity leave, the NICU nurse manager asked Carol to speak with a young couple who had just learned of their son’s unexpected diagnosis of Down syndrome. Carol hesitated at first, but then agreed to do this. Later she recounted to me that she planned to tell them what to expect medically, something she understood completely. Their child had a fifty percent chance of congenital heart disease (CHD) and certainly would have some degree of intellectual and developmental delays. 

She remembered that first encounter with those parents this way: “When we started talking, my nurse brain shut off and my mom brain came on. We talked about our dreams for our babies, and what our goals were. It was a second child for both of us. We laughed and cried together and decided that we would raise our babies with Down syndrome the same way we did our first born - because that's what we knew how to do - and hope for the best.”

After that first parental meeting, Carol spoke individually with every new parent of a baby born with Down syndrome at our hospital, whether or not their baby needed NICU care. Carol took her new role as chief parental support caregiver to a whole new level, and all the staff grew accustomed to counting on her expertise. Whenever new parents were reeling with the unexpected diagnosis for their baby, she could comfort them like no one else. She spoke minimally about the medical stuff and much more about their hopes and aspirations for their new baby.

Carol made raising a child affected by Down syndrome look like a special gift. Some days, her son’s condition made her appear positive about her life. Other days she admitted, “Suze, it’s so hard.” When Andrew was one, she and her husband split up, and she remained a single mother to Andrew and his big sister for more than twenty years. Carol joined the Down Syndrome Association of Central Texas and ultimately became a board member for that association.  At one point seven of the twelve association board members were parents she had met and talked with in the hospital. They served because they, too, wanted to raise awareness of Down syndrome and wanted all children with Down syndrome to have the same opportunities as any other child.

Throughout Andrew’s young life, Carol often entertained the NICU staff with updates of his progress and stories of his mischief. My favorite story was his flushing her wallet down the toilet. He was a stubborn child, but happily attended school where his teachers told her they thought him to be “articulate.” In the NICU, we celebrated with her every milestone he mastered, and for many years he participated in the Special Olympics. Once he became a teenager, his favorite event was powerlifting.

Andrew graduated from high school, with a diploma, and now attends a program that provides job training and daily living skills, hoping to one day live semi-independently. He has a job at a local café, works out at the gym, hangs out with his friends, or sits around in boxers playing video games - all things typical of most twenty-year-old young men. He has really done well, quite a bit better than I expected, and undoubtedly his good outcome is due to having Carol as his mother.

A few years ago, I told Carol the story of how my son, David, was bullied in elementary school. When he skipped the fifth grade and was placed in a sixth-grade class, he was immature for his age. The other boys were in a clique lead by a rough-and-tumble skateboarder, and David ended up with very few friends in his new class. I told her about the class bully who was ruthless to David for several months, always mocking and ostracizing him. Carol and I were together in the NICU, leaning against either side of a radiant warming bed, chatting, while a sleeping preemie lay nestled in a blanket between us. I was patting the baby’s bottom while Carol prepared a tube feeding. It was then that I shared with her that the only child who would sit with David during lunch that year was a teenager named Richard. I gazed into her loving face and shared that Richard was a sweet-tempered fourteen-year-old boy with Down syndrome. The afternoon I told Carol my story of how Richard had befriended my son and touched our lives, we stood there gazing at each other, and tears welled up in my eyes. Tears rolled down her cheeks, and we stood there for some time looking at each other, smiling and crying.

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This essay is an excerpt from my memoir, “So Many Babies,” which you can get here.

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When Jesse was born, she was good size for 28 weeks gestation, but she had severe pulmonary hypoplasia—underdeveloped lungs. Moreover, she required aggressive high frequency ventilation and medications to control her pulmonary hypertension, or high blood pressure in the lung arteries. The pain on her father’s face when we updated him at the bedside each day was obvious. He coped by asking questions about her lung physiology and why we used certain medications to treat her condition. Her dad worked in the operating room at our hospital and dropped into the NICU often before and after his shifts.

One night, about ten days into her care, Jesse experienced a major setback. Her oxygen needs soared to one hundred percent, and she became unstable. I was extremely busy admitting tiny preterm twins, and I called in my backup call partner. David took over Jesse’s care while I watched over the remainder of the active unit. In my mind’s eye is the image of my partner standing next to her bedside and “hand bagging” her. This means that he was using a resuscitative anesthesia bag and giving her extremely rapid and strong breaths of pure one hundred percent oxygen with his hands directly—for two hours. That night he became her human ventilator. Hand bagging can be an effective, life-saving technique, and this time it worked. Jesse stabilized and returned to her ventilator at lower oxygen settings. She slowly began to improve, although she went on to develop severe bronchopulmonary dysplasia (BPD)— so called chronic lung disease.

Her father and I really enjoyed working together, although I found her mother more difficult to get to know. However, she was always very calm and quiet. Plus, she asked excellent questions: Would Jesse ever be normal? Was there any brain damage? How and when would we know?

Jesse needed IV diuretics and steroids to improve her BPD, and fortunately, she had a good response to them. Arterial sticks for frequent blood gas measurements during a rapid weaning phase made her irritable and fussy, which caused her to backslide, so I placed a peripheral arterial catheter in her wrist, which her father was tickled to see us use. (Anesthesiologists often use arterial catheters to monitor blood gases and blood pressure without disturbing the patient.) That line lasted for ten days and allowed us to aggressively wean her off the ventilator.

After she was extubated and receiving oxygen by nasal cannula, we began to try feeding her by mouth. However, she was a miserable feeder from the start, with an uncoordinated suck and swallow. Babies on chronic mechanical ventilation can develop oral aversion. (They become used to having things stuck into their mouths for suctioning or feeding, and it upsets them.) After several weeks of the nurses’ attempting to feed her properly by nipple without success, I recommended a gastrostomy tube, or G-tube. This is a connection between the stomach and the outside of the abdomen into which food or formula is inserted directly, thereby bypassing the mouth temporarily.

My recommendation for the G-tube came after she had been in the hospital for twelve weeks, when she was 40 weeks “corrected” gestational age (that is full-term), but she still could not suck and swallow effectively. It was a routine time to consider this procedure, nevertheless this father surprised me with his response. He simply dug in his heels and refused. He stood at her bedside and said, “No, I’m not having it.” I guessed that he felt a G-tube would mark his daughter as somehow defective. He had probably seen other babies with neurological and chronic disease who required a G-tube. Once he refused, all we could do was to press on trying to feed her orally. Then, her quiet and calm mother stepped in to help her daughter. It took her mother visiting for many hours each day for the next two weeks to teach Jesse how to feed properly, but she did it! Jesse went home on oxygen by nasal cannula and full feeds which she nippled from a bottle, without a G-tube.

For months afterwards, whenever I saw her father in the doctor’s lunchroom, he would flip out a picture of “our girl” (our shared label). For several more years, whenever he saw me, he gave me an update and showed me her pictures. She had grown into a normal, bright, gorgeous child with no residual effects from her newborn ordeal. My partner, David, the one who had “hand bagged” her for two hours that night, died a few years back from a brain tumor. Before his death I reminded him of how he had saved Jesse’s life that night. He remembered, and in his usual quiet way, just nodded and smiled at me.

Recently, I caught up with Jesse’s father by email. He thanked me and the other doctors for our care after her birth and remembered how frightened he was during that time. He told me that Jesse was doing well, and that she was a senior at the Ann Richards School for Young Women Leaders in Austin. She excelled in debate and adored being a cheerleader. He was so proud that she was a member of the National Honor Society and looking forward to choosing a college to attend.

Finally, her father noted that she “wanted to go pre-med in college and become a neonatologist.” My eyes filled with tears as I read his note and happily recalled all that we struggled through caring for her as a sick, complicated newborn. What an amazing experience!

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P.S. She is attending Agnes Scott College in Atlanta and majoring in biology. She hopes to apply to med school next year. Fingers crossed.

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If you had a baby in the NICU, please tell me your story. I love NICU moms and dads!

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No new parent wants to be informed of a true birth injury in their newborn baby. Thank goodness, birth injuries are rare these days. The overall incidence of birth injuries in the U.S. is 1.9 per 1,000 live births (CDC and AHRQ data).

Rates of birth injury have decreased significantly over the last few decades due to improved obstetric practices and increased use of cesarean section (when indicated).

There are many reasons for prenatal care, and identification of risk factors for birth injury is one of them. These include maternal diabetes and macrosomia (a large baby over 4 kg or 8 pounds 13 oz.).

Similarly, there are many reasons for your delivery to be attended by a well-trained and experienced obstetrician or nurse midwife, preferably in a hospital or birthing center. Certain conditions during labor and delivery increase the risk of birth injury in your newborn and you need someone there who is trained to manage them. These include prolonged labor, instrumented vaginal delivery (vacuum/forceps), and shoulder dystocia.

During my practice I encountered many newborns with birth injuries and was required to explain what happened to the new, worried parents. That was never an easy task, although usually outcomes were good.

The most common birth injury is cephalohematoma, which occurs in about 1% to 2% of all live births. These are more common in instrument-assisted deliveries (e.g., using forceps or vacuum).

A cephalohematoma is a blood collection between the skull and periosteum, typically limited to one cranial bone. Ultrasound or X‑ray may be used to confirm if there’s a skull fracture. Fortunately, cephalohematomas are usually benign and self-resolving, but large hematomas may contribute to jaundice or anemia.

Many of you may remember your pediatrician telling you about this large, boggy bump in your newborn’s scalp. And you watched it resolve over days to weeks.

I have seen several skull fractures over the years, also associated primarily with instrumented delivery. Sometimes skull fractures occur spontaneously after delivery of macrosomic infants (very large infants) born to diabetic mothers. Skull fractures are rare, occurring in 2.9 per 10,000 live births.

Most skull fractures are linear and heal without intervention, but depressed fractures may need surgical evaluation. I have a story to illustrate this kind of skull fracture. These new parents were certainly taken aback, worried, and fearful, but all ended well for their baby.

Early in my career, one birth injury case at Texas Children’s Hospital, in Houston, impressed me greatly. This was a newborn with a depressed skull fracture. He was born by forceps-assisted vaginal delivery by a well-trained and talented obstetrician. Talking with the obstetrician, labor nurse, and the parents reassured me that the stainless-steel forceps blades had been placed properly around the baby’s head and used correctly to gently guide his delivery. No torsion was exerted, and no unnecessary pulling was described. Soon after birth, however, the baby had a brief seizure that prompted his admittance to the NICU.

There was a peculiar spot at the side of his head on the left where his skull was dented - like a ping-pong ball. His neurological exam was normal, but a CT scan of his head revealed the depressed skull fracture and a grape-sized epidural hematoma. This is a hemorrhage, or blood clot, that lies underneath the skull bone and presses on top of the brain. The hematoma required surgical evacuation, and the depressed fracture needed to be lifted.

After undergoing neurosurgery that day, the baby returned to the NICU very stable. His coagulation (clotting) studies proved to be normal, and he recovered nicely. The parents were told that this was “just one of those things—sometimes complications happen.” This is actually true: sometimes a procedure can be done with perfect technique and still something untoward will happen.

This obstetrician knew these parents well and, as a result, they coped nicely with this unexpected occurrence in their son. Of course, they were extremely worried when he had the seizure and needed NICU care, but when the CT scan defined the cause, and the neurosurgeon was there to intervene, they felt some refief. As their son stabilized post-op, woke up, fed well, and acted like a normal newborn they settled into the routine of typical delighted new parents. They all went home three days later, and fortunately, this baby recovered fully.

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For this fearful mother and her fetus, two intrauterine procedures were performed to remove fetal ascites—fluid in the fetal abdomen—and her baby girl was delivered prematurely at 35 weeks to be evaluated for congenital CMV. After her birth, infant Catherine was admitted to the NICU and we examined her blood counts, liver function tests, brain scans, cerebrospinal fluid exam and cultures, retinal exams, and hearing tests.

Even though Catherine’s symptoms were relatively mild, she had evidence of active infection throughout her entire body. She had low platelets (blood-clotting cells), hepatitis (liver inflammation), meningitis (spinal fluid infection), and evidence of retinitis (severe eye infection). Unfortunately, she was born with bilateral nerve deafness. If her congenital infection was allowed to proceed untreated, she would be severely affected and end up with significant neurodevelopmental handicaps, mental retardation, and blindness, in addition to her deafness.

Around this time, a pediatric infectious diseases specialist at Texas Children’s Hospital (TCH) had just begun a phase two NIH clinical trial of ganciclovir, a drug thought to be effective in the treatment of CMV. Drug dosing still needed to be worked out, and this drug at a higher dose was intended for babies with central nervous system involvement, just like my little patient. Catherine qualified for the trial, and her parents consented eagerly and with great hopefulness. I took care of their daughter during the eight weeks of her ganciclovir therapy.

Because of infection risk, we decided not to insert a central line, so Catherine required many IV insertions over those eight weeks. In retrospect, inserting a central venous line percutaneously (through the skin) would have prevented her from all those painful IV sticks over the weeks, but her parents had elected this course. We checked lab values for drug toxicity, followed her growth and liver function, adjusted feedings, adjusted drug dosing (according to protocol), and updated her parents daily. There were several dreadful IV mishaps (infiltrations) into her forehead and the back of her hand. (These healed well.)

Twice the drug dosage had to be altered or held because of kidney toxicity or white blood cell abnormalities. As expected, her mother needed personal attention and patient explanations throughout this entire ordeal, but she coped with her infant’s illness amazingly well. To me, she seemed calm and inquisitive. (Later, she told me that she was really a “nervous wreck.”) This mother preferred to express her breastmilk for her daughter’s feedings, and since it was culture positive for CMV, we all worried about possible viral transmission via the breastmilk. Our hope was that the baby would receive more maternal antibodies against CMV than she would receive any virus itself from her breastmilk, but no one knew for certain. 

Eight long weeks later, after ganciclovir therapy was completed, Catherine was found to be completely free of the CMV virus. Her treatment was a tremendous success! Because her hearing loss was identified early, and she was fitted with hearing aids around four months of age, she developed language skills normally. From the time of her birth, both she and her family learned to sign. When she was about a year old, Catherine’s mother brought her up to the NICU one afternoon for a visit (after an audiology appointment). She wanted to say hello and was excited to report that her speech development was on target, and that she appeared neurologically normal. We were both so elated, and her mom took a picture of me holding Catherine. (I can’t find that photo.)

Two years later, after my family and I moved to another city, her father sent me a copy of the TCH volunteers’ magazine, The Watch. On the front cover was a darling picture of Catherine at about two years of age. She had sandy curls and was grinning with a lovely sparkle in her bright blue eyes. The article recounted her eight weeks of struggles through the ganciclovir trial and highlighted the research of that pediatric infectious disease physician. Thankfully, young Catherine’s neurodevelopment remained normal despite her permanent hearing loss! Her thoughtful father wrote me a personal note thanking me for all my efforts, care, and concern. He certainly understood how much I genuinely cared about Catherine’s well-being and how hard I worked to ensure her recovery.

Just a few years back, I had the great good fortune to reconnect with Catherine’s mother, who is now living in Austin. I learned that her daughter grew up attending all mainstream schools aided by assistive hearing devices. She and her family used a total communication method called Signed English (in which grammar and syntax are different from American Sign Language).

Catherine didn’t receive a cochlear implant until she was a teenager. Her neurodevelopment throughout childhood and adolescence remained normal except for deafness and slightly altered speech. Recently, Catherine completed a master’s degree from the University of Texas at Austin. She now works as a hazard mitigation planner for a firm in Austin. She also served on the board of AURA ATX (An Austin for Everyone). As an advocate for deaf people, she is passionate about bringing disabled perspectives to urban planning.

To their well-deserved credit, both Catherine and her mother have become advocates for early CMV detection and treatment. Both of them gave presentations around the country highlighting the impact of congenital CMV and the importance of early detection.

Catherine’s mother lobbied for legislation in Texas that makes CMV educational materials available to the parents of infants, expecting parents, and women who may become pregnant. These educational materials—in both English and Spanish—which describe the incidence of CMV, transmission routes, and available preventive measures, are currently in use.

Unfortunately, the additional mandate for targeted screening for CMV didn’t pass the Texas legislature at that time. However, Texas is one of nine states that requires each newborn that fails their newborn hearing screening to be tested for congenital CMV. Her mother and I both hope that the day will come for universal newborn testing for congenital CMV.

June is CMV Awareness Month, so I will be writing more about this subject soon.

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When I arrived in the delivery room, Emily was blue and struggling to breathe despite receiving some blow-by oxygen. After quickly examining her, I noted her bell-shaped thorax, her deep chest retractions, poor breath sounds, and her protuberant abdomen which contained easily palpable, large cystic kidneys. They felt like two huge, hard bunches of grapes.

I suspected that she had Potter’s syndrome, and this beautiful little girl did prove to have infantile polycystic kidney disease. IPKD often presents with Potter’s syndrome — the most severe cases have very low amniotic fluid and as a result they are born with smushed facial features, a bell-shaped thorax, and severe respiratory distress resulting from underdeveloped lungs. IPKD is a rare genetic disorder affecting one in 20,000 children.

After Emily was intubated and supported on mechanical ventilation, we transported her to the NICU and inserted bilateral chest tubes to decompress her pneumothoraxes. Pneumothorax occurs when perforation in the diseased lung allows air to trap between the lung and chest wall, causing compression of the lung.

Thankfully, her pulmonary hypoplasia—lung underdevelopment—was not as life-threatening as typical for most infants born with Potter’s syndrome. Her kidney ultrasound confirmed bilateral polycystic kidneys. Because her kidneys’ had produced urine in utero, which in turn produced adequate amniotic fluid throughout the pregnancy, her lungs were only partially underdeveloped. The chest tubes were removed within the first week, she was easily weaned off the ventilator during her second week, and her lungs healed completely.

Although Emily continued to produce large volumes of urine during her first few weeks, her kidneys did not function effectively and soon she was in renal (kidney) failure. Serendipitously, my husband became her pediatric nephrologist, and we experienced many difficult and different emotions while working together on Emily’s case. For us it was a challenging and thought-provoking situation.

Early on, her parents were, understandably, still reeling from her diagnosis. IPKD causes severe kidney failure and leads to dialysis and ultimately the need for kidney transplantation. Liver scarring is present at birth, but liver dysfunction does not occur until later in childhood. During her first month, her parents slowly adjusted to her diagnosis and her care needs. Within a few weeks Emily began peritoneal dialysis, through a catheter entering her abdominal cavity.

The dialysis machine cycled fluid into and out of her abdominal cavity to remove chemicals and toxins that built up in the absence of proper kidney function. Her father, a brilliant chemist and university professor, would sit by her side and study the dialysis machine, its settings and functioning. Paul was a tall, handsome man who was typically quiet, although he seemed to enjoy talking with the pediatric residents about these machine settings and how dialysis works.

Emily’s mother, Joanie, a practicing attorney, was an attractive, thin woman who continually looked despondent and seemed always to be on the verge of tears. (Understandably so.) She expressed breastmilk for her baby’s nutritional support and proceeded to cope with having a chronically hospitalized baby, another child at home, and a full-time career. Most days when Joanie came in and out of the NICU to see Emily, she looked haggard. However, we always enjoyed talking about breastfeeding and any struggles she encountered while pumping her breastmilk. Whenever I answered her questions, I also commented on how cute Emily was, and that invariably made her smile.

Unlike a lot of other chronically ill babies, her daughter had truly sweet temperament, and I enjoyed pointing this out to her mother. Years later, Joanie recollected in an interview about her experience that I “was the one who got them thinking of Emily as a person.” During that period in my life, having two small children of my own, I didn’t have enough free time to get to know Joanie very well, or to support her more fully, but my husband did. Emily’s parents were agreeable, intelligent, and levelheaded, and sometimes I found it painful to watch them handle everything that happened to their daughter so courageously. Perhaps my husband and I identified with them a little too much. I often wondered if - in the same situation - I would be as calm as Emily’s mother was.

Emily went home from the hospital on dialysis when she was a few months old. My husband continued to oversee and direct her dialysis and care. In the interim, she required several readmissions to the hospital for various problems. Blood type and various other histocompatibility markers were studied among her family members, and it was determined that Emily and her grandmother were a perfect match. When she was only two years old, Emily received a kidney transplant, a miraculous gift from her sixty-year-old maternal grandmother. Theirs became a tremendous success story for the children’s hospital renal transplant program.

After my family moved away from Houston when Emily was four, Joanie and I wrote to each other and maintained contact. Later on, my husband saw Emily in the summer when she, like the other “kidney kids,” attended Camp Okawehna in Tennessee each year. Camp O was an overnight camp in the piney woods outside of Nashville, TN. These renal dialysis children always attended camp as a group. Each June, my husband and the dialysis nurses shepherded a large contingency of patients, nurses, dieticians, social workers, and physicians to attend the camp for one week.

All the children at Camp O were either on peritoneal dialysis or hemodialysis and some had already been transplanted. Emily attended camp each summer for many years, from about age eight onward. Like all the other kids there, she played with other children who were just like her and she felt normal. These “kidney kids,” as they were lovingly called, all had lines and tubes sticking out of them, and they all had scars from previous surgeries. Most were very short, having had poor growth for many years, but they still loved normal child-like activities—running, playing, kicking, throwing, competing, swimming, making craft items, and performing in talent shows. They even ejoyed a prom night each year. The Junior League of Nashville brought in used prom dresses and had them fitted for the girls to wear!

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I continued to correspond with Emily’s mom for many years. We exchanged Christmas cards, family pictures, and personal letters. It was inspiring to watch her parents become champions and activists for organ transplantation. However, Emily’s life was not easy by any estimation. Throughout her childhood, she demonstrated enormous courage in overcoming some serious complications, infections, and hospitalizations, but Emily never rejected her grandmother’s kidney. She was growing into a happy teenager when her liver function began to deteriorate.

Everyone viewed Emily’s family as strong and loving. From the time Emily was eight years old, her parents and big sister lived on campus and served as student counselors at a local university. As a result, Emily grew up keen on learning and constantly surrounded by students. She was a good student herself and, despite all that she had gone through, she was praised by her teachers for her strong mind, her wit, and her sense of humor.

Despite her chronic illness, Emily loved life and grew to be fiercely independent. She performed in musical theater, played tennis, and hiked in the Colorado Mountains with her family each summer. At home she enjoyed playing the guitar and composing songs. Emily continued to do well in school and ultimately attended a small college in Texas. She was there for two years before her untimely and tragic death at age twenty. 

To this day, Emily’s mother continues to raise money for Polycystic Kidney Disease research, and she served on the board of the International Polycystic Kidney Disease Foundation for many years. Both Joanie and Paul continue to serve as advocates for organ donation in Texas.

All throughout my career, my husband and I received profound gifts from knowing special people like Paul and Joanie, extraordinary parents who settled close by our sickest patients and slowly revealed their loving and caring character. Knowing them and their little girl was truly a blessing.

In the U.S., we celebrate National Donate Life Month in April each year, and Living Donor Day is the first Sunday in April, and this year it falls on April 6th.

This story is an excerpt from my memoir, “So Many Babies” which you can access here.

If you enjoy my writing, please hit the❤️ button below and restack by hitting the 🔄️ button. Then other people can find my work. Thank you!

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I will never forget the morning Carol was admitted to LDR 8 in my hospital for delivery of her second child. Her pregnancy had been uneventful, and labor and delivery were going smoothly. I was paged to come down to see her newborn son. When I walked in the door, I saw her baby laying quietly on the warming bed—pink in room air, breathing well, and kicking around. Sitting up in her bed she said, “Suze, he’s a little floppy, can you check him out?” As I assessed him, I noted his undeniable features of Down syndrome – slanted eyes, flattened nose and midface, protruding tongue, distinctive ears, palmer creases, and clinodactyly (characteristic incurving) of both little fingers.

Carol heard me sigh, confirming what she already suspected. I quietly but honestly informed her of my concerns, and then added, “There is no heart murmur, so that’s good. We’ll get an echocardiogram today to make sure he doesn’t have congenital heart disease (CHD). Then we’ll see what the chromosomes say.” Of course, she was heartbroken and started to cry. Feeling miserable myself, I gave her a hug and told her, “Try not to worry, Carol. We’ll take care of everything he needs.”

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Thankfully, an echocardiogram (heart ultrasound) performed later that day revealed no congenital heart defect. Two days later, the DNA analysis confirmed Andrew’s chromosomal abnormality as Trisomy 21. When I told Carol the news, she cried some more. As I sat with her, I still felt miserable. After his birth, Andrew lost too much weight and became jaundiced because of poor breastfeeding. Babies with Down syndrome are notoriously ineffective at nursing because of a weak suck and swallow, and poor tone in the muscles of their head and neck.

Carol was determined to breastfeed him and learned to use a silicone nipple shield to assist his poor latch. In addition, we used a feeding tube to supplement nursing with her expressed breastmilk. Carol was incredibly patient with him, and by ten days of age he learned to nurse well enough to gain weight and go home. Carol stayed home with Andrew for three months, and when she returned to work, she seemed optimistic. All the staff were relieved that she appeared to be taking his diagnosis in stride.

Not quite one month back from her maternity leave, the NICU nurse manager asked Carol to speak with a young couple who had just learned of their son’s unexpected diagnosis of Down syndrome. Carol hesitated at first, but then agreed to do this. Later she recounted to me that she planned to tell them what to expect medically, something she understood completely. Their child had a fifty percent chance of CHD and certainly would have some degree of intellectual and developmental delays. 

She remembered that first encounter with those parents this way: “When we started talking, my nurse brain shut off and my mom brain came on. We talked about our dreams for our babies, what our goals were. It was a second child for both of us. We laughed and cried together and decided that we would raise our babies with Down syndrome the same way we did our first born - because that's what we knew how to do - and hope for the best.”

After that first parental meeting, Carol spoke individually with every new parent of a baby born with Down syndrome at our hospital, whether or not their baby needed NICU care. Carol took her new role as chief parental support caregiver to a whole new level, and all the staff grew accustomed to counting on her expertise. Whenever new parents were reeling with the unexpected diagnosis for their baby, she could comfort them like no one else. She spoke minimally about the medical stuff and much more about their hopes and aspirations for their new baby.

Carol made raising a child affected by Down syndrome look like a special gift. Some days, her son’s condition made her appear positive about her life. Other days she admitted, “Suze, it’s so hard.” When Andrew was one, she and her husband split up, and she remained a single mother to Andrew and his big sister for more than twenty years. Carol joined the Down Syndrome Association of Central Texas and ultimately became a board member for the association.  At one point seven of the twelve association board members were parents she had met and talked with in the hospital. They served because they, too, wanted to raise awareness of Down syndrome and wanted all children with Down syndrome to have the same opportunities as any other child.

Throughout Andrew’s young life, Carol often entertained the NICU staff with updates of his progress and stories of his mischief. My favorite was his flushing her wallet down the toilet. He was a stubborn child, but happily attended school where his teachers told her they thought him to be articulate. In the NICU, we celebrated with her every milestone he mastered, and for many years he participated in the Special Olympics. Once he became a teenager, his favorite event was powerlifting.

Andrew graduated from high school, with a diploma, and now attends a program that provides job training and daily living skills, hoping to one day live semi-independently. He has a job at a local café, works out at the gym, hangs out with his friends, or sits around in boxers playing video games—all things typical of most twenty-year-old young men. He has really done well, quite a bit better than I expected, and undoubtedly his good outcome is due to having Carol as his mother.

A few years ago, I told Carol the story of how my son, David, was bullied in elementary school. When he skipped the fifth grade and was placed in a sixth-grade class, he was immature for his age. The other boys were in a clique lead by a rough-and-tumble skateboarder, and David ended up with very few friends in his new class. I told her about the class bully who was ruthless to David for several months, always mocking and ostracizing him. Carol and I were together in the NICU, leaning against either side of a radiant warming bed, chatting, while a sleeping preemie lay nestled in a blanket between us. I was patting the baby’s bottom while Carol prepared a tube feeding. It was then that I shared with her that the only child who would sit with David during lunch that year was a teenager named Richard. I gazed into her loving face and shared that Richard was a sweet-tempered fourteen-year-old boy with Down syndrome. The afternoon I told Carol my story of how Richard had befriended my son and touched our lives, we stood there gazing at each other, and tears welled up in my eyes. Tears rolled down her cheeks, and we stood there for some time looking at each other, smiling and crying.

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Wednesday March 21, 2025 is World Down Syndrome Day

This essay is an excerpt from my book, “So Many Babies,” which you can get here.

If you enjoy my writing, please hit the❤️ button below and restack by hitting the 🔄️ button. Then other people can find my work.

Thirty-six hours after mom’s admission to the hospital, baby A began to have heart rate decelerations and her doctors recommended delivery. Jennifer’s babies were delivered by C-section under general anesthesia. Baby A weighed 930 grams (2 pounds), Baby B weighed 750 grams (1.6 pounds), and baby C arrived weighing a whopping 1,100 grams (2.4 pounds).

I was the lucky neonatologist who attended this delivery and cared for them during their NICU stay. Each infant was born quite responsive and each was intubated and placed on mechanical ventilation. Shortly after birth they were each given artificial surfactant directly into their lungs.

Baby A, whom they called Allison, responded well to the surfactant and was stablized on low ventilator settings. Baby B, whom they named Fern, struggled to breathe despite maximal respiratory support. After her dose of surfactant, Baby C, whom they called Caroline, was pink on minimal ventilator support and extubated to nasal CPAP, where she continued to breathe entirely on her own. 

The girls received routine intravenous nutrition, and once mom had produced some expressed breastmilk, colostrum, they were all fed mom’s milk. Their breast milk feedings were advanced slowly and surely. Jennifer visited the NICU to see her daughters as soon as possible, and she continued to visit her girls daily while they were in the NICU. She was typically present for several hours each day. Most days Jennifer held two of her babies skin-to-skin, sometimes called “kangaroo care,” which encouraged their growth, minimized their apnea, and decreased their chances of infection. For several weeks, their mother’s breastmilk was fortified with protein, calories, electrolyes, vitamins, and minerals. Allison and Caroline gained weight well, and Allison was quickly weaned off the ventilator to nasal CPAP support, just like Caroline. All three girls had normal head ultrasounds, a screening test for any possible intracranial hemorrhage, a common complication of extreme prematurity.

Fern continued to struggle with severe respiratory distress and pulmonary hypertension. For several weeks she required maximal ventilatory support, while her sisters thrived. 

Both Jennifer and Jeff visited their girls every day. Mom usually stood at their bedside talking, stroking, and singing to her daughters. Dad often sat nearby reading his Wall Street Journal. One day, unexpectedly, while her mother was visiting, Allison developed a severe heart arrhythmia. Her erratic heart rate caused her to go into shock, and for this she required cardioversion. Her mother stood twenty feet away calmly watching as our NICU team stabilized her daughter. Allison had a structurally normal heart and, subsequently, was treated with a medication that controlled her heart rhythm nicely. 

Caroline grew and thrived without any complications. She had mild apnea of prematurity, which resolved. However, little Fern continued to struggle and required intravenous steroids in order to be weaned off the ventilator - at seven weeks of age! This treatment was not without risks for further complications, specifically an increase in cerebral palsy. Her brave parents chose to take the risks and treat Fern with life-saving steroids. The medication worked and Fern was extubated shortly thereafter. Jennifer held all three of her daughters together on a large fluffy pillow at eight weeks after their birth.

Fern’s CT scan of her brain at 38 weeks corrected age showed no evidence of periventricular leukomalcia (one harbinger of cerebral palsy). We were all - parents and NICU staff - relieved at this great news!

The triplets’ mother visited every day and during her daughter’s stay. In her spare time she assisted the NICU staff in creating a nursing mothers’ support group. Jennifer was lucky to have a great breastmilk supply, enough for all three girls. (Some moms are high milk volume producers.) Her presence in the weekly support group encouraged other mothers to join the NICU nurses and Lactation Consultant and support one another to establish and maintain an adequate breastmilk supply for their sick babies.

Allison and Caroline were ready for discharge by 39 weeks corrected age (very near their due date), long before their sister, Fern, was ready. Mom took this in stride and continued to visit Fern daily until she was ready to go home on a small amount of oxygen through a nasal cannula at 42 weeks corrected age.

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Four years after her girls were sent home from the NICU, Jennifer helped to arrange a fundraising luncheon “baby shower” to raise money for Hand to Hold, a national nonprofit organization that provides NICU parents with peer support from seasoned NICU parents who have been trained to help out other NICU parents while their baby is in the hospital. Jennifer’s “baby shower” raised over $100,000 for this wonderful organization.

Jennifer said that she chaired the fundraiser “because of what I went through. I handled it poorly and I want other preemie moms to know that they don’t have to feel lost.” She went on the say that “Hand to Hold can help them feel hopeful, connected ,and give them the support I didn’t have.”

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