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.
