by I strongly recall when we received AJ’s diagnosis. Things were grim. The doctors that came into our room were quiet, subdued, and almost scared to talk to us. Our baby not only had down syndrome, but also only had half of a heart (HLHS). We were told that there were very few, if any, cases that resembled AJ’s and that we should consider taking him home on hospice. They told us that we had to consider his quality of life. We were preparing for the worst.
I, of course, did not want to accept that as the truth. Before I was willing to accept that my baby was not going to live, I needed to validate the information I was given.
I spent countless hours in the PCICU room on google, searching for someone, anyone else who had walked this path prior. I tried every variation of phrasing I could think of: “Hypoplastic Left Heart Syndrome and Down Syndrome”, “HLHS and Trisomy 21”, “half a heart and down syndrome”…. I even simplified to “Down Syndrome and Heart Defects” and scoured through lists of foreign words, hoping to find something that resonated.
Eventually I found one kid, on a blogger site, that had been written over a decade prior. Unfortunately, my attempts to reach out to the author were fruitless.
I felt defeated. Hopeless. The lack of information available was confirming everything that the doctors were saying. If it hadn’t been for a side conversation where we were told we could get a second opinion, I’m not honestly sure where we would be today.
There are other families with HLHS and Down Syndrome children.
We’ve since learned that there ARE in fact other kids with the same diagnosis. Parents of kids who have down syndrome and single ventricle heart defects are few and far between, but we exist. Our stories have a wide degree of varying outcomes, but the fact remains that we aren’t alone. There are other kids who have walked this path. There are other kids who continue to walk this path.
At least once a month I find a post in one of the general heart parent support groups from a mother who has been handed the exact same news as we were – Down Syndrome and HLHS. Searching for support. Hoping that they aren’t alone and that there are in fact stories of hope that they can follow. Those groups often have hundreds of posts a day. How many posts are out there that I don’t see and comment on? How many families don’t even think to look in Facebook support groups? I know I didn’t.
We don’t have all the answers. Our kid is even used in medical journals and discussed at conferences as being “new” to certain complications. But we do have a story to share. We have hope. We have a whole lotta love in one little boy who has changed the world around him. We have things that have worked for us as medical / special needs parents. And I feel we certainly owe it to ourselves and the other families out there that may be walking similar paths to share it.
