|This has American statistics but the questions you should ask hasn’t changed.|
Finding out about CHD was not a choice for us as a family. Until Joshua came we had never heard of congenital heart defects. When I heard the term ‘birth defect’ I imagined a woman I saw once when I was a kid who had a tiny hand coming out of her elbow. I had no idea the devastating things that can happen to a baby while in the womb. My biggest concern on learning that I was pregnant was miscarriage, once I made it to the second tri-mester I breathed a sigh of relief and began to get really excited. We were asked if we wanted to do any genetic testing, for different types of syndromes etc. but we said no, in our mind the child was there, why worry what might happen when he was born? Neither Tim nor I believe in abortion as a choice, so why stress more tests?
The one thing we really did want to know, mostly because neither of us are very patient people, was the sex of our child. I can’t tell you how excited I was for that ultra-sound. It was something I counted down to, anticipated more than my birthday (a huge deal for those of you who don’t know me) and when the day came I couldn’t contain my excitement. We had a name picked for both sexes, Kiera for a girl, or Joshua for a boy. Tim and I both hoped for a boy, maybe that’s wrong, maybe we should just have hoped for a healthy child, but we both longed for a son. When they showed us his ‘package’ (the technicians word not mine) we both cried with joy. This was our Joshua. We saw and heard his heart beat, not knowing that it was a broken heart we heard.
Just a week later we got a call asking us to go for a stage two ultra-sound, there was a small chance of a problem they said, ‘probably nothing’ but they wanted to make sure. So Tim and I made an appointment and off we went. A week after that we were asked to go to the Fetal ECHO lab at Sick Kids in Toronto. We were again told ‘it’s probably nothing, let’s just be sure.”
As you know, this was the day that we came to know of Joshua’s heart defect. This was the day that we learned first hand what CHD is. My prayer is that you hear about CHD here on this Blog, and not in a hospital.
If you are regular readers to this blog then you have heard the story before, but bear with me for a moment. I have a purpose to rehashing this particular tale.
There is nothing worse than hearing a doctor tell you that your child is sick, nothing worse than hearing him say ‘there will be no miracles here’, nothing worse than staring death in the face and having the professionals say there wasn’t much hope, that you should abort and try again.
This post is about hope, hope that we found because there are people out there doing research for CHD, people who are doing what they can to improve the chances for little boys and girls not yet born. Joshua is now a statistic in hope. He’s proof that there are kids who can survive an early birth with a heart defect. However, and this is important… he’s also evidence that early detection can save lives! If we hadn’t known about his heart defect Joshua would not be here. I would be visiting a cold grave each week rather than getting warm snuggles and soft kisses. I am not trying to be dramatic, I am just simply trying to make my point clear. One of the reasons I feel so passionate about CHD awareness is because people, young men and women having children, need to know about early detection. The more knowledge you have the better the chances that your baby CAN live!
I don’t know how many times through out the pregnancy we thought we he would come early, each time they would say to me ‘we need to take him today’ (he was technically viable, if not for the heart defect). Each time we would ask for a pediatrician to come in to advise us on what to do, and each time the Dr. would say ‘with his condition he would not be viable’. The other doctors who had wanted to take him early would dig in and do their best to keep him where he was so that we could have more time until he became ‘viable’. Finally, when Josh was five weeks early they had no choice to take him. As you know from the last few posts, we should have lost him that night. If not for the amazing team at both Mt. Sinai special pregnancy unit and Sick Kids in Toronto we would have lost him. By all accounts we should have lost him.
There are many reasons to educate yourself on CHD’s, to educate those around you. Early detection is just one of those reasons. I ask you again, to consider sharing this post with those you love, with friends, followers, twitter-nation, whomever you choose. Please, don’t just read this and move on to the next posting of interest. Share it, and help us to raise awareness.