wolfhirschhorn.org

We’ve been enjoying the posts on this blog for a few months now. I’d like to introduce you to our son Brodie, he is 15 months old and at 9 months old was diagnosed with Wolf-Hirschhorn Syndrome.

Brodie is our first child. At the 20 week ultrasound we learned we were having a son and that’s when things started getting really fun for me. I could suddenly visualize in a concrete way how a little boy would shape our family and our lives. We began planning a nursery, his first toys, the baseball diamond we would paint on his wall…. He wasn’t even born yet and I imagined backyard games of catch when he was old enough, and rough-housing in the living room after dinner. We did one of those “4D” ultrasounds at 30 weeks and were in awe of the video and pictures of our little boy. As we watched the screen we were speculating which arm our little guy was moving around more- “maybe he’d be a lefty pitcher like his dad.” We even joked in my family that when we were deciding names we had to screen them by how they would sound being announced in a stadium- “on deck for the Reds- leading tonight’s lineup ‘BRODIE MURRAY!’.” It was all light-hearted and natural to mind-float this way, just a lot of big dreams for our little pea-in-a-pod. It never crossed our worried mind that before he was one year old his ability to ever walk or talk might come into question.

When Brodie was born he came one day after his due date and was only 5 lbs. 5 oz. He had a cleft palate (in the back of his mouth in the soft palate) and high white blood cell count which kept him in the hospital for a week. The first six months were so hard because of feeding issues and he stayed so tiny, but we were excited to be parents and loving that he was finally here with us.

Things didn’t get scary until he was 9 mo. old and he started showing signs of failure to thrive; when he weighed exactly the same for two months straight we were deeply despairing. He was also by this time clearly delayed. We thought it was tied to the cleft palate- that once we got it repaired, Brodie would eat good and gain weight and catch up developmentally.

We finally gave his genetics doctors permission to do the chromosome tests and were stunned with the results. The diagnosis was very somber and bleak, the doctors had a lot of scary things to say and one or two encouraging things- he remarked that “Brodie has good muscle tone in his legs compared to what is typical,” which I think was more him thinking out loud than speaking for our benefit. As stunning as the news was, we had a lot of questions…somehow the first for my husband and I both was, “will he go to normal school.” I guess that’s the question to get to the point of just how handicapped are we talking here. They said “probably but in special classes.” I don’t remember much else of what little was discussed. They pushed some google printouts about the syndrome toward us. It honestly felt like we- Brodie- was being written off like “ok, we don’t have to do any more testing, the outlook isn’t good, here’s the name of a support group.” “You don’t need us anymore, but come back in a year so we can take more pictures for our research.” They didn’t say that in so many words but that’s what came across and I wanted to throw their camera (the one they were forever taking pictures of his face and legs with) against the wall- well later when we got home I had that thought, when I wasn’t so quietly stunned. Since then I have fantasized many times about throwing that camera across the room, not the most mature thoughts to have but therapeutic just the same. I suppose I needed something to be angry at.

Following that day were many days of processing for my husband and I. In one way a huge burden was lifted regarding the feeding issues. I was feeling so much pressure on every bottle, every three hours, and feeding took an hour many times just to get 4 oz. in him, and then for an hour before a bottle I just dreaded it and felt sick and worried, “will this be a good feeding or a bad one? I have to keep Brodie from being fed by tube.” I was about to crumble under the weight of living this way for weeks and weeks. So now with the diagnosis, days with Brodie gradually started feeling very relaxed and we were able to switch focus from feeding to his early intervention therapies.

I have moments where thinking to Brodie’s future is very difficult and I can’t fight tears back, but really it has been overwhelmingly natural to be positive and strong for Brodie and just do what we have to every day. Since the diagnosis I just keep thinking “this is what Brodie was given to work with, Brodie is different from typical but Brodie is Brodie and we’re gonna work with it and have fun every day doing it!” (almost everyday).

Brodie’s cleft repair in June went great. That helped him so much. And we’ve just been cruising since then on his therapy schedule and enjoying the summer. So far Brodie’s heart and kidney tests have been clear and no seizures to date. My heart breaks when I think of the trials of other children in those areas, AND when I think that Brodie might face the same trials one day.

But, positivity is very important to us and we constantly try and keep the highest picture in our minds for Brodie and for what he might be capable of. His temperament is so content and happy and some feistiness is coming through now too. He is growing out of cuddling and really starting to assert himself to getting around. It’s a great feeling that we are always making forward progress. He might learn a skill and forget it and learn it again, and also spend A LOT of time learning each skill, but we’re carving those roads between his nerve endings and his brain, as his therapists describe it, and we see progress weekly! Brodie sits up by himself now, pulls to stand, waves hello, claps, and says “kitty!” We laugh a lot in our house because we have a lot to laugh about and to be grateful for.

Keeping an attitude of gratitude,

The Murray Family