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When An Early Start Puts You Behind: Finding New Milestones for Preemies at UVA Health Children’s

Babies crawling in a baby race

Take a supplement the size of a horse pill? Sure. Give up alcohol and (almost all) caffeine? Let’s do it. Stop eating sandwich meats and sushi? Done.

When you’re pregnant, you make sacrifices to give your kid the best start. But sometimes, you take all the safeguards and still come up short. In my case, roughly 14 weeks short.

I didn’t give my baby, born at 26 weeks, the start I wanted. Instead of those first few blissful weeks of staying at home and getting to know each other, we navigated the UVA Health Children’s NICU. It was a week before I could hold her, and even then, only for a little while. Not that we didn’t spend a lot of time together. Her, mostly sleeping in a tiny plastic bubble. Me, mostly watching in between talking to doctors and nurses. 

I probably asked a million questions. But they all really boiled down to one: What kind of future would she have? How could I give her a future full of opportunities rather than closed doors? 

We know preemies are at higher risk for learning disabilities, cerebral palsy, hearing loss, and more. For babies born at term, milestones help predict these things and allow for early intervention. For preemies, it’s harder to judge exactly when a delay is a problem. That’s why I joined a study at UVA Health Children’s aimed at finding these answers.

How Premature Birth Puts Babies Behind

When a baby is born early, they don’t develop any faster than they would have in the womb. In fact, if anything, they develop slower. At 26 weeks, a baby is supposed to be cushioned in amniotic fluid, hearing sounds as if underwater. Nestled in a warm, dark, quiet space. 

They’re not prepared to feel hot and cold, be touched, hear hospital monitors, or eat. Experiencing these too early can cause lasting setbacks. 

Actual vs Adjusted Age

Preemies have 2 birthdays and 2 ages to keep track of.

A 12-month-old baby born 3 months premature has an adjusted age of 9 months. This suggests they’re 3 months behind developmentally. But they’re often even further behind. They may:

That’s because while other babies use energy for growth and development, preemies are stuck fighting to survive. This can create future health risks.

Added Health Risks

Preemies don't get the in-utero development they need. They also are vulnerable to risks like brain bleeds. All of this leads to an added risk for some health problems. Preemies are at higher risk for:

Learning How to Better Help Preemies

We have clear milestones for babies born at 40 weeks. We know when they should sit up, crawl, and start talking. When they don’t reach a milestone, we know exactly when we need to intervene.

Why does this matter? Because the earlier we can intervene when a child falls behind, the easier it is to help them. The sooner we treat a problem, the less likely it is to have lasting impacts. And if there are lasting impacts, they’re less likely to be severe.

The problem is we are nowhere near as clear on milestones for preemies. So it’s harder for us to spot trouble early.

But what if we could pinpoint the moments where preemies start to fall behind and intervene? 

It requires finding a significant sample size of premature babies. Tracking them over several years. And getting parents to fill out surveys. Together, it amounts to a staggering amount of data collection and analysis. 

But, that’s exactly what Karen Fairchild, MD, approached me about while I was in the NICU. Fairchild is a dedicated neonatologist, or NICU doctor. She also does extensive research and leads many of UVA Health Children's initiatives to improve the outcomes of premature infants.

Tracking Preemies’ Growth & Development

Do You Have a Premature Infant?

You don't need to have been a patient in UVA Health Children's NICU to participate. If your baby was born prematurely, you may be eligible.

The Baby Brain Initiative Project (BaBI) is the first comprehensive study of premature babies during their first 5 years of life.

The BaBI looks at 5 key areas where early signs of difficulty can show themselves. Parents answer questions about: 

Based on the parent’s answers, they’re given a score. The score tells you whether your baby’s skills are on track or if they may need help. If you’re in the “close but not quite” zone, you learn what areas to work on. If your baby is further behind, early intervention can help them get back on track. 

Just Say Yes 

It wasn’t the first research study I’d signed my baby up for. The more I read about the history of neonatology (it was a long 4 months, y’all) the more 1 thing became clear. I was in the right place and in the right decade. For a 26-weeker, the odds have never been better than they are right now. And in a level IV NICU ranked among the best in the nation, she had every therapy available to her. 

These advantages were only possible because of 2 groups. 

Doctors who refused to accept limits of viability, average outcomes, or the current standard of care. 

And parents who said yes to research trials. For the same reason they took prenatal supplements and changed their lunch menu. Because they wanted better for their child. Or if not their child, someone else’s child.

For the care that my 26-weeker was receiving, thousands of parents before me had signed research forms and agreed to try for better.

How could I possibly say no? Especially when all I needed to do was fill out a few surveys on how my daughter was doing (already my favorite subject). Fortunately, other families felt the same way I did.

Right now, there are 100 babies enrolled in the BaBI study. The study is still actively enrolling, and if you have a preemie baby, it's an easy way to help out future NICU parents.

It’s a strange club. Like being a NICU parent, it’s a club you don’t really want to join. But it's one where you’re deeply appreciative to be in such good company. 

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