As a preemie mom and someone who works heavily in the preemie community with parents and professionals, I think endlessly about long-term outcomes for premature babies. The story started with my own daughter, Becky, and has continued over time to include the millions of preemies born worldwide each year.
“You will be here until 36 weeks or until you deliver,” labor and delivery nurses said to me time and again throughout my 30-hour bedrest in the Labor and Delivery Unit at the hospital. I had just hit 30 weeks gestation when a family outing an hour outside of town went completely awry as my water broke in the car on the way home.
Suddenly, my whole world turned into increments of time surrounding the chaotic and panicked drive back to our home area and straight to the hospital. Then it was increments into how long I could keep Becky from delivering as we nervously played the “waiting game” to pray that I could get two doses of a steroid shot to help mature her lungs faster. 30 hours later and only a single dose in place, I was having contraction after contraction after contraction, each one more powerful than the last. No one said a word about delivery, no one said anything about what to do. I hadn’t even had childbirth classes and was supposed to have had my maternity tour that same weekend.
At 11:40pm the nurse came in and said, “You are delivering tonight.” Ten minutes later, with a five-second lesson in Lamaze breathing, Becky came into the world with a tiny but fierce kitten cry. As the nurse held her up to me for a millisecond prior to her being whisked off to the NICU, my brain was scrambling to reconcile the fact that my baby was here. Then she was gone, off to the NICU with my husband in tow.
For a brief hazy moment I was dragged, stretcher and all, into the NICU to see my daughter. Becky was stressed, alarms were going off, and my brain went into overdrive as they hauled me back to my room and told me to “rest.” The stress I felt was immeasurable, off the charts. The extreme urge to care for my daughter overtook me, but in the throes of post-labor exhaustion and an Ambien given to me mid-labor (a last ditch effort to stop the labor), I was quickly falling into the dark hole of sleep. Then everything went black.
Later on that morning, my husband helped me into a wheelchair and wheeled me to the NICU for my first real viewing of my daughter. What I saw put me into mental overdrive again. My sweet newborn daughter hooked up to a lot of equipment, alarms going off, her crying, and my realizing this was anything but normal. And all the while I had team members telling me, “She’s doing great!” My mind could not accept this and my gut sensed a future that could be challenging. Would she walk? Would she talk? Would she be able to go to school? What would her future be like?
Advocacy Beyond the NICU
More than 15 years out from the NICU, I now realize that new mothers, especially mothers of premature babies and babies with special needs, have an innate instinct about their newborns. They know a lot more about that baby than even the doctors and nurses. Yes, medical data is useful, but instinct is something else above and beyond that. It has its own sense of certainty that cannot be quantified by numbers and statistics.
You see, for 15 years I have spent a lot of time advocating for my daughter. From the NICU days (trying to sort out feeding issues, breathing issues, heart defects, reflux, sepsis to name a few) to home (sorting more feeding issues and the medical equipment that accompanied my daughter home in the form of oxygen and a monitor) to the toddler years and on into the preschool and school years. By the time my daughter was six years old and we started getting the first of numerous developmental labels — autism in Kindergarten, ADHD in second grade and then Cerebral Palsy and Scoliosis at a shockingly late age of 13.5 years old — I had already been vocally noting my concerns for many years. This was not just because of the outcomes data I had been made aware of over time. It had much more to do with my gut instinct.
As an advocate in this community of children who were preemies and have special needs, I also have the opportunity to meet the teens, young adults, and adults who are living out the legacy of their early births. These are the outcomes data sets that fill up many a study. They provide insight into the quiet, hushed, and frenzied discussions in the NICU between distressed new parents and the medical team. They also throw a curveball into the face of medicine, as they manage to rise from what should have been a death sentence and are able to overcome numerous odds. They are, as we call them, fighters. What they might lack in health and physical strength early on, they more than make up for in a battle cry for their determination in life.
Yet those very same studies, those very same statistics? They do not tell the entire story because of the very fact that the sample sizes, the numbers of patients in a study, are so small. How are we supposed to extrapolate meaning from a hundred, maybe a thousand or more former preemies to provide even a glimpse into true outcomes for what are 15,000,000 preemies born globally annually? It doesn’t add up. The studies make semi-conclusions because they end the paper with, “more study is needed.” Yet these very studies are what medical professionals in the NICU depend upon when talking to those distressed new parents.
The Follow-Up Maze
Should that baby make it home from the NICU, the follow-up is a maze for even the most organized and most capable parents. The pediatrician, often the gatekeeper of referrals for families, is less likely to have had significant NICU experience in his or her training, and so maintains a generalist point of view towards all things infants, toddlers, and children. Preemies are not typical, and while their whole development may appear like other children in the exam room, it can also look vastly different outside of it. With so many things to cover in a well-check appointment, development is not always on a pediatrician’s radar. And even a parent pointing out a concern won’t get notice if she or he isn’t extremely vocal. This happened to our family, and I am anything but shy in advocating for my daughter. Go back and read her outcomes again. Those diagnoses did not come about easily and I spoke up a lot.
Add to this that the Early Intervention system is a patchwork of providers paid by federal and regional programs with only so much money to go around. Those children who present with a delay must do so with significant numerical deficits based upon evaluation by program team members. Again, it is gatekeeping by the system.
How do these babies go from a proactive environment in labor and delivery with lifesaving interventions and therapies, to the NICU with the highest-end medicine, only to immediately fall into the “drip drip drip” of post-hospital care? Why do we think it is okay to have a child’s delay become extreme before doing anything? We would not do this with an 80-year-old presenting with a stroke. He or she would be in rehabilitative therapy within days or even hours after the incident. For NICU babies it becomes a roll of the dice.
Outcomes Research through PreemieWorld
Well, many of these babies do grow up. And they vote. And they have been coming to me and telling me their stories. They talk about the struggles they have had due to a lack of help post-NICU. They are wondering how a society that values saving them as tiny babies no longer values them and their outcomes once they are discharged. Everything is a fight — medical care, medications, therapies, schooling, and then work and the rest of life.
This is why PreemieWorld is heading into outcomes research to provide the global preemie community and their families an outlet to not only up those samples sizes in research studies, but also — more importantly — to connect with each other and use that combined voice to speak up and make clear the need for changes. Changes not only for the older patients, but also to pave the way for the younger ones. Because at the end of the day, research should not just be about the researchers meeting their goals to fund a project, get a paper published, and present results at a conference in hopes of influencing practice. Patient communities should be able to do the same without needing medical and therapeutic credentials. Their stories are their credentials and they deserve to be heard.