Dealing with the invisible disabilities of preemie babies

This guest post is from Nick Hall, an amazing father who's behind Parents of Preemies Day; the first one is happening this Friday, March 23, a day of recognition for the parents of premature babies. Every year about 13 million babies around the world are born prematurely—that's 10 percent of all births. Nick and his wife, Jennifer, founded Graham's Foundation in 2009 in memory of their son. The foundation sends care packages to parents during their stay in the NICU; its website provides a place to share stories and find support.

My daughter, Reece, and my son, Graham, were delivered on Thanksgiving Day 2006 by emergency C-section. They were 25 weeks and three days gestational age—only a little more than halfway through a normal pregnancy. My wife was extremely sick. I was scared for her and scared for our babies. They were essentially still fetuses, not yet ready for the world outside the womb. Graham was with us for only 45 days. Reece held on, overcoming more than my wife and I would ever have imagined possible.

 Jenn and Reece, 2 months old

As my wife and I coped with Reece's four months in the hospital and the realities of prematurity—going on and off a ventilator, brain bleeds, infections, surgeries—our friends, relatives and coworkers realized sensitivity and understanding were called for. One wonderful friend brought us home-cooked meals every week. Another walked our dog on a regular basis. Once we made the transition home, however, we discovered that the same level of sensitivity wasn't always easy to come by. 

We knew that keeping Reece away from the outside world was in her best interests, so common illnesses like colds wouldn't interfere with her ability to grow and get stronger, but it was difficult. As much as you'd like to believe that people will understand completely, they didn’t. People literally told us that Reece needed to be "exposed" to germs to strengthen her immune system without understanding how much that might set her back (or worse).  

While my wife and I are blessed that our marriage stayed strong, it wasn't easy and other relationships were tested. Under normal circumstances, we would have focused an immense amount of time on our children, but Reece's unique birth and health circumstances meant we were focusing almost entirely on her needs. People in our lives didn't always understand that sometimes what we needed was space. Not everyone was sympathetic or even considerate when we kept our distance.

Reece developed hydrocephalus as a result of her brain bleeds and today, at age 5, she needs a shunt to help fluid in her brain drain properly. You can't see it but you can feel it. One side effect is that she gets migraine headaches and doesn't have the ability to go-go-go like her peers, even though she wants to. We have to make sure she has body/mind breaks throughout the day or we know that she will end up getting a migraine at the end of the day. Sometimes that means missing out on fun. In the beginning, there were friends of ours who didn't get why we were holding her back. In some cases, it took a lot of explaining.  It often looks like we are overbearing, when in fact, we would like nothing more than to let her go-go-go.

Reece is tall for her age, so she fits in with other kids in her class, though developmentally she needs extra time to catch up to them. Because of that, we're delaying kindergarten. My wife has had to deal with judgments from others who only see a tall, seemingly healthy girl—not a preemie.

Many of the lasting effects of prematurity, like so many other challenges children with special needs and their parents face, are often invisible. Of course, sometimes the effects of prematurity on families are obvious: A toddler in leg braces. A father who can change a feeding tube with his eyes closed. Thick glasses on a three-year-old. A mother who gave up a career because her daughter needed a level of care that daycare couldn't provide. More often, however, the lasting impact of prematurity on children and families simply isn't obvious at a glance—sensory issues, behavioral issues, autism spectrum disorders, and weight and growth issues. How often do people interpret common effects of prematurity as somehow being the fault of parents?

There are those who might consider the invisibility of many of the effects of prematurity a blessing, children who look in every way average have one less burden to bear. But parents of preemies know that the invisible special needs can become the root of misunderstandings that can strain and even irrevocably damage relationships.

After my family's experience with prematurity, I vowed to do what I could to help other parents of preemies survive all aspects of prematurity, including the isolation and misunderstandings. Part of showing the world that prematurity doesn't end when a family leaves the NICU and that the effects of prematurity can't always be seen is showing the world the real faces of prematurity. That's what Parents of Preemies Day is all about. We're asking parents of preemies to share their stories on our Facebook page to become a part of our Parents of Preemies Day banner that will be unveiled on Parents of Preemies Day, showcasing all of the pictures of parents and their preemies and their messages of hope, resilience, and miracles.

Sometimes, combating the misunderstandings that result when a health issue can't be seen is as easy as sharing the reality with the people around you. If you know the parent of a preemie or someone who knows a family coping with prematurity, please share Parents of Preemies Day with them. With your help, we can open people's eyes to the invisible effects of prematurity.