The Preemie Brain

KROMKRATHOG/freedigitalphotos.net

KROMKRATHOG/freedigitalphotos.net

There are misconceptions about what it’s like for a baby born three months early, and they generally revolve around the idea that a baby who can live, even with extensive intervention, is basically just a tiny version of a full-term baby. And that just isn’t true. At all.

Preemie brains are wired differently. Especially the brains of preemies born months early.

I’ll admit it. Sometimes, I’m a little brusque when people question why my kids have therapy. I really try to be open and honest about all aspects of having a preemie, because if someone bothers to be interested, I want to share what I know. But, there is an element of the population that asks questions in a judgmental way. Why would a baby need therapy? Don’t I know preemies will catch up eventually anyway?

And they’re wrong. Babies often do need therapy, for a variety of reasons, and just like we seek out medical care, as parents we should be open to occupational, physical, and speech therapies. It is our job to change therapists or end a therapy program if we see that it isn’t working for our child, but I don’t understand being closed to the options available for your child before trying any of them. And I don’t know why another parent would question my child’s need for therapy. Besides, so much research shows how malleable a small child’s brain is. The more you encourage it to rewire itself around the damage caused by such an early birth, the more possibilities exist for that child.

When it comes to preemies and brain damage–caused by oxygen deprivation, brain bleeds, holes in the brain, and overstimulation to an immature neurological system–the jury is out. No one can tell you exactly how a child will do in a year or two years or ten years. This is why early intervention is critical and why developmental milestones are so crucial. Sure, the preemie born two months early won’t roll over or sit up on the same schedule as a full-term baby. But, when he isn’t rolling over at 7 months old, doctors and therapists begin to worry that larger issues like cerebral palsy exist. It’s not just about catching a preemie up to a full-term baby; each milestone met is evidence that a baby’s brain is continuing to grow and develop.

I also get frustrated when people tell me they have a preemie, who was born three weeks early, and that they understand what it’s like to have a preemie. I’m not taking away from the fact that a birth experience three weeks early can be a surprise and stressful, but the long-term concerns and care for a baby born at 34 weeks or later is completely different from all the risks of babies born MONTHS early. A baby born at 26 weeks has an entirely different experience from one born at 36 weeks. The earlier the baby is, the more risks for complications; it’s exponential. Before I was a mother, I’m sure I didn’t know the realities of having preemies–the therapies, diagnoses, interventions–but I know I wouldn’t have assumed that a baby can pop out of the womb three months early and act like a full-term baby. Babies are never meant to come into the world weeks and weeks early, and just because we have the capabilities to give them a great shot at life doesn’t mean the journey is easy. For most preemies born before 32 weeks, it takes years–yes, years–to catch up developmentally, and they may continue to face the challenges of being a preemie well into their childhoods and beyond.

Not all preemies are created equally. Another misconception is that because a neighbor had preemie twins born at 29 weeks who were typically developing babies within months of their release from the hospital, my experience should mirror that one. Each preemie is different, as different as their experiences and personalities and genetic makeup. So many NICU journeys overlap, but each one is unique. There is no baby whose story is just like anyone else’s. Miraculous stories should be shared, but sometimes the miracle is that a baby lived in the first place, not in how fast he bounded out of the hospital. Sometimes, when the expectation is that a baby should come home before her due date, it sets an unfair bar of achievement. And expecting a preemie who comes home to act like a full-term baby is not a fair standard either. It sets the whole family up for disappointment and frustration, and it takes away from all the miracles achieved on a daily basis.

I was hard on J. I knew in my head that his development would take longer, that he would be a baby well into his second year. But, I wasn’t prepared for the reality. I pushed him hard to walk and talk. Now, I better understand that he did hold himself back, as it is in his nature to do. J doesn’t rock the boat or take risks, and walking is risky for a baby because it involves falling. I see that J needs time and space and encouragement, and any frustration on my part hurts his progress. I also know more preemies than I did as a brand-new mother. I better understand that J’s health itself should be celebrated; we are so fortunate for it. I wish I’d focused on that fact more and worried less. But, I felt that I was constantly explaining to the world at large why my 17-month-old wasn’t walking, why my 2.5-year-old wasn’t talking, why my 3-year-old was wearing 24-month clothes. That’s all part of the journey, though.

Looking back, J tackled developmental goals impressively; it was just done with his characteristic caution and quiet reserve. He wasn’t showy. He didn’t develop in leaps and bounds, as my daughter does. Each day was a slight improvement on the day before, until before we knew it he was a typical 3-year-old. I was so frustrated that J didn’t walk until he was 17-months old, when he had the ability a month or two earlier. Then, enter M, who didn’t walk until she was nearly 20 months old and 17 months adjusted age, 3 months past the norm. M is healthy, strong, physically-active; I think she’ll be an athlete with her energy level, determination, and competitive spirit. But, she walked much later than J, and had he been my second child instead of my first, I would have better appreciated all of his achievements. Preemies are just on their own schedule.

I am just now fully realizing something critical: a preemie brain is phenomenally different from a full-term brain. Sometimes, we expect to see a preemie with asthma or glasses but not a preemie who takes two years to walk. I think this is because the stereotypes are based on a dated understanding about the capabilities of NICUs. The current medical technology is amazing, so many babies who come out of the NICU are in excellent outward health. They look perfectly healthy, but the NICU can’t alter the reality that a baby’s brain is not made to regulate temperature and breathing or to process the nerve sensations of the human touch at 26 weeks. I have witnessed how my babies are wired a bit differently. My husband and I now contribute some of the quirks of our children, which mirror no one else in the family, as having to do with the extraordinary feats of their brains. Sensations like light and sound are just different to preemies, even in babies who aren’t diagnosed with any other condition. Our preemies are easily over-stimulated and hard to relax. They don’t want to be rocked or held. They struggle to fall asleep. They cannot sleep in the car despite how exhausted they are, even on 12-hour road trips. In fact, the more exhausted they are, the less able to fall asleep they become. My son screamed for his first months at home, and the only way to wind him down was to push him in his stroller around the house in circles until he grew drowsy. His body would twitch as he struggled to relax. And we have literally held my daughter down until one by one her muscles relaxed; we could feel her falling asleep from her legs, to her arms, to her hands, and finally her eyelids. Sure, some full-term kids have some of the same problems, but to the extent that we notice it? We are regimented about nap times and bed times, about routines, and about sleep environments for a very good reason; sleep can be a challenge.

Another anomaly is that both of our preemies were left-side dominate as tiny babies, when almost no one in our families is left-handed. The conventional wisdom that you won’t know if a child prefers one hand over another until age 3? Hogwash! Ask our long-time physical therapist, and she’ll be our expert witness. The first hand both kids used to put a tiny, baby fist in their mouths? The left. The arm they first used to pull up? Their left. The first steps they took? With their left foot. My kids are complete opposites in temperament and personality, and the strengths of one are the weaknesses of the other; yet, they share left-handedness. More preemies are left-handed than full-term kids, and I would love to see more research concerning why, not just because it’s interesting but because I think it has to do with unusual brain development. A better understanding of that brain development could also shed light on all sorts of risks that our preemies face: autism, SPD, ADD/ADHD, cerebral palsy…and the list goes on and on.

Preemies are exceptional, in every sense of the word. They are amazing and unique, and they aren’t just tiny versions of bigger babies. It’s a completely different experience, and I guess I’m just a little out of breath with saying so. I love questions and curiosity; I like relating to other parents and sharing our experiences. Just because this is my life doesn’t mean I’m not curious about all the unique aspects of parenting that someone else has experienced. I just don’t want to have to justify why my child receives therapy or additional medical oversight or state medical services. I’m tired of explaining that part, like I’m some sort of taker of the medical system or some over-reacting stage mom.

I’m just a mom who has preemies, and I’m doing what any mom with tiny babies would do.

Another Victory

I took the kids to the activity center last week to a free play session in the gymnasium. The entire room was lined with mats, encouraging kids to tumble and run and play wildly to their heart’s content. It was a joyous chaos.

Not long ago, I never would have considered such a place. My son is reserved and cautious; a year ago he would have taken one look at that wild room filled with loud, squealing, out-of-control children, and he would have walked back out the door. For so long, he was delayed in his speech and in his physical abilities. He was small for his age, and other kids pushed him around at playdates and in parks. Even if they meant him no harm, he was nervous around kids he didn’t know, especially wild ones playing in wild places.

It wasn’t long ago that M didn’t move enough to play in a gymnasium. Now, she’s crawling AND walking; she’s toddling and falling and exploring her world in ways she couldn’t just a few months ago.

I’m always struck by the sensation that people outside of our world who don’t know us have no idea of these sorts of victories. J was jumping off of mats and hanging off of bars. M crawled for a solid hour straight, only stopping to smile at other children bumping into her, before racing off to new discoveries. Nothing about these children suggests all the therapy it has taken to get us here. All of the interventions and teachers and advice and doctors. All of it.

As I watched J play with a friend, I remembered how distraught I was in his first months home. He was so small and so fragile. He was terribly unhappy. Compared to a baby boy born just five days earlier and dressed in the same red Christmas outfit, they looked months apart–which felt like oceans apart to me. And now, they’re jumping and laughing as equals, as friends.

This is what we’ve worked so hard to accomplish. Two kids happily rolling and walking and sliding and jumping.

Early intervention should never be underestimated, because maybe these kids would have gotten here. And maybe not. But, it’s not a maybe worth chancing.

This small victory has been worth it. It has been worth all of it.