The Prader-Willi Syndrome Beginning Was Scary
Prader-Willi Syndrome is a very scary thing to deal with when your child is born. Your baby doesn’t cry, doesn’t eat, doesn’t move. She is floppy and weak. You don’t know what is going on. You don’t know who to turn to. Often the doctors don’t know what’s going on for a while. In our case, we were lucky and left the hospital in under three weeks (many stay for several months), but we didn’t get a diagnosis of PWS for almost 5 months.
A lot goes through your mind in this time. Is my baby going to be okay? Will she ever walk or talk? Will she understand that we are her parents? Will she have the ability to feel emotion? Will she ever smile? And then there are the appointments. Doctor after doctor. Geneticists, neurologists, endocrinologists, orthopedists. Trying to reorganize your work schedule, your social schedule, your hygiene schedule. Coming to grips with the possibility that all the dreams you had for this child may not come true.
At some point during all this, the diagnosis comes. And it can feel like a crushing blow to your soul. Why her? Why us? What are we going to do? The articles on the internet seem so cold and bleak. The doctors seem clueless, or worse, helpless. You begin to wonder if there is hope for normalcy.
Everything Is Okay!
I’m here to tell you that there is hope! After a few days Brooke started to eat better. After a few weeks she was moving around. And after a few months, miracle of miracles, she smiled. And it just kept getting better from there. She hit her milestones at about twice the calendar time of a typical child. She rolled over, she crawled, she got her teeth, she started to walk.
Unlike the scary beginning, this time is very pleasant. From the beginning, Brooke slept through the night. She’s very well behaved. We’ve gotten hundreds of parents’ comments on what a “good baby” she is. My wife and I just smile at each other, like we’ve got some hidden parenting secret. We’ve met other PWS parents, and some of them have become lifelong friends. We’ve joined groups, written about our experiences, attended conferences, and hosted amazing fundraising walks. And Brooke is a smiley, friendly, beautiful, amazing toddler.
Quite a few times, I’ve heard others refer to this as the “honeymoon period”. The time when the initial scary period is over, and the later harder times have not started yet. And I can definitely see why that applies. I often forget that Brooke will someday likely have more challenges than she does now. I see her longer milestones as an opportunity to spend more time with her as a baby. And I heartily enjoy her giggles, her raspberries, and her big, innocent smile.
The Future Will Almost Certainly Be Harder
Based on what we have learned from other parents, things won’t always be like this. Things probably won’t get permanently horrible, but they will get harder. And that’s a scary thing to deal with on its own. How do we prepare? What can we be doing now to ensure that she has the best life possible later?
And then there are the stories. Prader-Willi Syndrome can really put a scare in you. A child who eats until their stomach bursts. A teenager who is driven by hunger to look for food and is killed by a car. These stories are so heartbreaking, so horrifying, words cannot describe. I cry to myself for what those parents must be going through, and for the beautiful lives cut short. I never want to even think about having to deal with that.
Even the stories that are not suddenly tragic are concerning. Endless temper tantrums. Behavioural issues in school. Mental health problems. People not understanding. And the ceaseless, relentless hunger that will gnaw at my child for her entire life. These are the things that can keep you up at night with worry.
We Have A Lot Of Hope
Right now, though, I’m not worried. The amount of passion that the PWS community has is uplifting. The rapid progress made with research is encouraging. And my daughter’s progress is inspiring. Her smile brightens my day no matter what bad things happen, no matter how down I am feeling.
I have hope that we will find a way to reduce Brooke’s challenges. I have faith that we will be able to handle whatever comes. Our family, our friends, our community, and our constant fight to beat Prader-Willi Syndrome will get us through.
Theory and Practice
In theory, PWS is a bleak, dismal diagnosis that can scare you. In practice, we have an amazing, friendly, beautiful little girl that we spend wonderful time with everyday. And we have friends, a community, and researchers by our sides to make the hard future a little less hard.
And in the meantime, I’m going to enjoy our honeymoon.