Nathaniel’s Story-CHD Diagnosis 1 Year Later…

Today marks that day that we found out about Nathaniel’s heart defect. It has been exactly one year since  the doctor told us that our son would need open heart surgery. It has been an incredibly emotional and stressful year. The months have flown by. They have been filled with lots of joy, tears, questions, and lots of prayers. Before I continue, I do want to let everyone know that his condition IS correctable. Aside from his heart defect he is thriving and happy and you would never know there was anything going on with him just by looking at him.

In November 2015 we found out we were expecting a baby! It was a huge surprise to us. Since we struggled to conceive our daughter and it had been almost four years since she’d been born at that point, we sort of were content with the fact of possibly not having any more biological children. I had made piece with it and we had decided that we would not stress with Trying To Conceive (TTC) or seek fertility treatment. We were happy and if we were to be blessed with another baby we would be overjoyed. But if not, we were just as content. So, when that test came back positive we were stunned and than overjoyed!

My first trimester was totally normal. Like my first pregnancy I had terrible morning sickness and was extremely tired. But that all ended by the time I hit about 16 weeks. All of my blood work came back normal. All of our early ultrasounds were normal. So when we went in for our anatomy scan at 19 weeks we were not concerned about anything. We initially didn’t want to know what we were having, but we couldn’t do it! LOL. We ended up finding out that we were having a boy! And we were very excited.

During the ultrasound Nathaniel was in a terrible position. He was facing my back and he was laying right under my bellybutton. And the ultrasound tech was having trouble getting some good pictures of him. So when the doctor came in to do a double check, she told us that she was a little concerned and that it looked like his heart valves were not in the right place; but not to worry too much because of his position it could just be a lot of shadow play. But she wanted us to go see a pediatric cardiologist just to make sure everything was okay. She immediately had us scheduled the next morning with a cardiologist.

During that appointment I knew something was not right when the doctor who was doing the ultrasound looked at me and asked how old I was. I had turned 33 literally two days prior. The ultrasound lasted about 45 minutes and he told my husband and myself that he did have some concerns and that he wanted us to wait for him and he would be right back. We found out later that he was on the phone with my doctor confirming her suspicions about the baby’s heart. When he came back in he told us that Nathaniel had at the time two holes in his heart and a common valve. He was diagnosed with Atrioventricular Septal Defect or AVSD. If is also know as an AV Canal Defect.

Since that day, exactly one year ago, we have been praying and worrying, and praying some more that Nathaniel’s surgery will go as planned. It is not easy hearing that there is a problem with your baby. It is even harder knowing that your baby will need open heart surgery. Before that day, a Congenital Heart Defect or CHD was the furthest thing from our minds. We had no idea that 1 in 100 babies are born with a CHD. There are currently 35 different CHD’s that can be diagnosed. We are fortunate enough that Nathaniel’s is considered to be one of the mildest CHD’s.

The smaller hole in the lower chamber of his heart ended up closing on it’s own before he was born. But he still needs surgery to close the large hole in the upper chamber of his heart and repair the valve. Basically, his oxygenated blood and un-oxygenated blood is mixing in the upper chamber of his heart. And in order for him to live a full and healthy life, this needs to be repaired.

So… We are looking at surgery sometime this summer. It won’t be easy. I almost fall apart every time I think about it. But I know it’s necessary. And we will get through it. I strongly believe that we are never given anything that we can not handle.

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