As an obstetrician-gynecologist I’ve counseled many women about their risks of a premature delivery and delivered hundreds of premature babies, yet I didn’t think much about the ramifications after I handed the tiny newborn to the neonatal intensive care unit team. And there are many ramifications.
Ten percent of births in the United States are premature, meaning they take place before 37 weeks. More babies die from prematurity in the first month of life than from any other cause, and it is a significant cause of disability in children.
And yet, we rarely discuss prematurity.
[Learn how to care for a premature baby at home.]
Of course, I’ve long known there were tragic outcomes, but I didn’t dwell on those. Prematurity is rarely addressed in the news, and most medical literature on the subject has a summary line that goes something like this: The majority of preterm survivors are found to do well and have fairly normal lives.
And while that statement is technically medically correct, it is also deeply deceptive. I uncovered that deception during my personal journey with prematurity.
Pregnant with triplets at 36, I had 36 hours from the time my water broke very early at 22½ weeks until my first son, Aidan, was delivered to process the prognosis (a less than 1 percent chance of survival if I delivered, which included the high likelihood that I would lose all three babies) and make a decision between aggressive and likely futile intensive care or palliative care (just the comfort of a blanket and an embrace, as he was expected to live only for a few minutes).
I was scared and shocked, there wasn’t even time to get angry. I had to make the hardest parenting decision of my life with ultrasound gel stuck to my ill-fitting hospital gown, perched on an uncomfortable bed in a barren hospital room while my uterus contracted and amniotic fluid dripped between my legs.
When we focus only on prematurity survivors, we erase that experience, for the parent and the child. Even 16 years later, at some point almost every day I think of Aidan. What I remember most vividly about his brief life is the volume of paperwork required to document three or four minutes of existence, and the pain of calling around for a mortuary.
I managed to stay pregnant for 3½ more weeks with my other two sons, but the dread that I would deliver at any time was constant. Each time my uterus contracted — which was a lot — I thought, “How can I possibly go through it all again?” And yet, some people do.
My sons, Oliver and Victor, were born extremely prematurely at 26 weeks, weighing 1 lb. 11 oz. and 1 lb. 13 oz., respectively. If you looked at them now you would see two 16-year-old boys on the verge of manhood. They would look like they have done “well” and are living “fairly normal lives.”
But when I hear the words “well” and “fairly normal,” I am enraged.
The legacy of extreme prematurity and the interventions that kept my boys alive left them with an assortment of medical conditions and disabilities, many of which I had never even heard of before.
Doing “well” took 13 weeks of intensive care for Victor and 11 weeks for Oliver. I don’t have words to describe never getting to hold either son at birth. I’ve never had the experience, so I don’t know what I am missing.
The NICU is like a war zone, except the battle takes place in your baby’s body. You can do some things that are truly helpful, like holding your infant against your bare skin (kangaroo care) — although there were so many tubes and wires, it felt as if I was holding a bundle of electronics. You can also pump breast milk, but for some of us that means trying not to feel guilty when your terribly sick body can’t produce milk, so you have to abandon the effort.
But mostly you just have to bear witness.
And some parents must make the decision to go home to other children. Imagine having to return to work before your baby comes home from the hospital.
For my boys to do “well” and live “fairly normal lives” took 40 or so medical appointments in just the first three months home from the hospital. I stopped keeping count because the number of appointments was ridiculous.
While other new parents were figuring out mobiles or vibrating chairs, I was learning how to change a regulator on an oxygen tank. There were surgeries, monthly injections, daily medications, multiple hospitalizations, physical therapy, occupational therapy and feeding therapy. Not to mention the battles with my insurance company — the most ridiculous was being notified that both boys had exhausted their oxygen benefits for the year.
I mean, come on.
I was fortunate to have financial privilege to make up insurance shortfalls and medical privilege to navigate the behemoth that is American health care.
Then there is the ongoing emotional trauma that I suspect catches parents in different ways.
I hate baby showers, because I feel the need to pretend I understand what it is like to bring a newborn home from the hospital.
When did my boys sit up? When did they walk? Talk? I have no recollection. I remember when each one came off the ventilator the first time and then the second time. When they were discharged from the hospital. When they no longer needed oxygen tanks. Each time Oliver was admitted for pneumonia. Each surgery.
Baby books? I have a tiny blood pressure cuff that fits around my index finger, the little knit hats and shirts made by volunteers that helped keep my boys warm inside their isolette. And the even smaller set made for my son Aidan. That is tucked out of sight, but I always know it’s there.
A constant stream of developmental assessments detailed my children’s’ deficits. I would read each one and think my child was so much more than the sum of those words. And then I would see other 3-year-olds eating solid food or 4-year-olds standing on one foot or 5-year-olds riding bikes, and a blackness from my heart whispered, no, my boys are different.
And sometimes the ramifications of prematurity haunt you years later: for example, this year when I had to wiggle into the top of the M.R.I. machine so I could hold my son’s head for reassurance during a heart scan. Or when I sat in the parking lot of the high school after advocating for services, crying big heaving sobs, unable to catch my breath, chest aching because getting people to do the right thing can take everything you have.
While the causes of prematurity are often medically complex and prevention is challenging, many premature deliveries could be prevented with simple medical interventions: In the United States, for example, universal, quality, accessible prenatal care would make a huge difference. We also have to acknowledge and address the impact of racial disparities on prematurity, especially for African-American women. In third-world countries many neonatal deaths from prematurity could be prevented with heat or a little oxygen.
Not every premature delivery is as early as mine, but even babies born at 35 or 36 weeks can experience medical complications of prematurity. It galls me that other families are going through any part of what I experienced and we are not doing everything as a society to prevent it.
Prematurity is not just expensive for parents. The costs are borne by insurers, who pass them along to their customers; by taxpayers in services for schools that have to accommodate prematurity-related disabilities; and in greater Medicaid costs.
Everyone is paying for prematurity in some way or another.
Death and disability — two of the terrible legacies of prematurity — are difficult subjects, but when we don’t talk about them we not only erase the experiences of many families, we also lose opportunities to explain why preventing prematurity matters.
Unless we start taking about the realities of prematurity and stop sanitizing the experience with tidy summaries like most babies do “well,” nothing will change.
[With a premature baby in the NICU, parental support is key.]