Having been an avid sports fan for as long as I can remember, I’ve always paid very close attention to statistics (the sports kind only, not the scholastic kind). Moneyball is my bible. Professional baseball organizations who don’t use statistical research to assemble their teams drive me insane. I can quote you random football player’s statistics from 10 years ago. The point is, I’ve always paid very close attention to numbers when it comes to sports.
Never in my wildest dreams did I think I’d need to be concerned with numbers when it came to my children. That all changed with Paige’s lissencephaly diagnosis. There’s one number, almost 6 months later, than I’m still having trouble accepting:
This represents the odds of a child being born with Lissencephaly.
We won the wrong lottery.
Lissencephaly occurs in 11.7 per one million births in the United States, according to The Cortical Foundation. In other words, 1 in every 85,470 children are born with this disorder. As Steph mentioned in an earlier entry, there was nothing that could or could not have been done to prevent Paige’s condition. We recently found out the genetic mutation that caused her condition was NOT due to a trait that Steph or I carried. This is obviously good news for our future family planning purposes, as the odds of having a second child with liss, when the parents don’t carry the traits that cause it, shoot up to 1 in several million. But none of this helps Paige, and I continue to struggle with the fact that we defied the odds in such a catastrophically negative way.
It goes without saying that our disappointment/resentment rests with lissencephaly, and not our wonderful daughter. Paige is an angel. There’s nothing in the world that makes me happier than seeing her smile. She’s made a lot of progress with her therapy, is almost able to roll over on her own and is starting to reach for things. That might not sound like much to parents of a healthy child, but for us, it’s borderline earth-shattering. Remember, 6 months ago we were told to expect her to basically be a vegetable for the rest of her life. So the fact that she’s made as much progress as she has (in such a short period of time) means the world to Steph and I. We (in conjunction with our doctors and the truly wonderful folks with Pennsylvania’s early intervention program) continue to provide her with the best care, treatment and therapy available, and we’re fortunate to not have had any major setbacks at this point. Most importantly, and I can see it in her eyes, I know, that she knows, she’s loved.
As Paige’s first birthday nears, Steph and I have spent a lot of time reflecting. Reflecting on how our lives are now drastically different than we pictured when we got married four years ago, or even when we were expecting Paige at this time last year. Reflecting on all the good memories we’ve made as a family, as well as the not so good ones (like being holed up in a hospital for a week in January). What I think about, and am the most thankful for, however, is the way our families and friends have rallied around us to support Steph, Will and I in whatever fashion possible. My brother and sister have both spent hours keeping an eye on Will while Steph and/or myself had to be at the hospital with Paige. Steph’s family, although 3 hours away, has traveled out to Pittsburgh at the drop of a hat, with no questions asked, when we’ve been in need of assistance. (I know how important Steph’s family is to her, and I am thankful that they’re able to be as involved as they are despite the distance between us). My parents have spent many Saturday nights watching our kids, just so Steph and I could get out of the house. We’ve also received cards and donations from people we’ve never met in our lives. I admittedly have a somewhat jaded view of the world as a result of everything we’ve been through, but the multitude of kind gestures and notes we’ve received from folks near and far has restored my faith in humanity a bit.
We’ve met several families in the area who have a child with the same condition as Paige, and have basically formed our own support group. We’ve shared advice and positive memories, as well as stories of setbacks, heartbreaks, and obstacles that everyone has encountered. Based on everything I’ve heard from families who have a child with this condition, we are fortunate that Paige is doing as well as she is. Many children with liss need to have a permanent feeding tube inserted into their throat or stomach, as they have trouble swallowing. Paige eats like a cow, with no issues, and is gradually taking on more and more solid food. Aside from the infantile spasms she experienced a few months back, she hasn’t had any relapses with seizure-related activity. She has made chartable progress with all three forms of her therapy – physical, occupational and visual, and is very conscious about what’s going on around her.
We are realistic, however, and understand this could all change in a heartbeat. The toughest thing to come to grips with is the fact that there is literally no positive outcomes to this situation, as far as her long term health is concerned. Lissencephaly isn’t a disease, like cancer, that has a chance to be cured. When you google lissencephaly, you’ll see phrases like “no treatment,” “incurable,” “severe mental retardation,” “shortened life expectancy,” and “increasing seizure activity to the point of death.” If there is one thing I’d tell the parents of a newly diagnosed lissencephaly child, it would be to stay off the internet. Because you won’t find a shred of good news. I’m not saying you need to kid yourself about the realty of caring for a liss child, but if you spend all day scouring the internet looking for bad news, you’ll miss out on the opportunities for good times you have with your child. And as Steph and I have found, those good times are aplenty – regardless of what your child is or is not able to do. As we’ve said a hundred times, Steph and I are focused on the things we can do to help Paige, and all the joy she brings us. We are not, and never will be, concerned with her “shortcomings” that nobody has any control over.
In addition to the families we’ve met locally dealing with the same struggle, Steph is part of a large online network for parents of children with brain malformations. We all have a connection, because there are very few people on the face of the planet who know what it feels like to experience the pain we have. Steph has told me dozens of stories about liss children who have suffered major setbacks, or even passed on. It absolutely crushes me every time I hear one of these stories, whether or not we’ve actually met the family involved. And selfishly, part of that crushing feeling overtaking me is knowing that we’re likely to deal with the same setbacks someday, probably sooner rather than later. I’ve been able to keep it together, for the most part, throughout this ordeal, but I broke down sobbing a few weeks ago on the way home from work. Steph was telling me about a liss child who had been otherwise healthy, but suffered a massive seizure out of nowhere and passed away. This child’s family, despite what had to be unfathomable grief, managed to find some of the nicest ways to honor their daughter that I had ever heard of. There are certain days when the magnitude of our situation smacks me right in the face, and that happened to be one of those days. Because we know, with near 100% certainty, that we will someday feel the same grief as that little girl’s family.
I don’t like, or rely on, statistics as much as I used to.