Friday, December 18, 2009

The Diagnosis

Every parent looks forward to the 20 week ultrasound when they can see their baby. We went for our 20 week ultrasound on November 18th, 2009... a day I won't ever forget. The only concern we had was whether or not he would cooperate and show us whether he was a boy or a girl. Little did we know that our lives were about to be turned upside down.

I remember lying there excited to find out that we were having another little boy. Then suddenly the mood changed when the ultrasound tech got very quiet and said there was a problem with the heart. I was in shock, not knowing if I heard her correctly. How we take for granted that everything would be ok. I wouldn't have even noticed there was something wrong with the heart but when she said those words I looked at the monitor and knew it was bad. I remembered being there 2 and a half years ago pregnant with my son and seeing his heart on that screen. Jacob's heart looked nothing like Aidan's did.

The ultrasound tech told me that she couldn't find the 4 chambers and she didn't know what it was but something was very wrong with the heart. She then told me the doctor was out of town and we would have to come back A WEEK LATER!

My husband and I left in tears, this was not the happy day we were so looking forward to. After talking with family and friends we decided I couldn't wait a week to find out what was wrong. My friend Natalie called another perinatal center and told them what happened. They called the place I had been the previous day and called me back to tell me the diagnosis that was suspected was Hypoplastic Left Heart Syndrome. My husband and I had googled the night after our ultrasound and that was our "Worst case scenario". It is 100% fatal without surgery. Pretty much the worst CHD Diagnosis possible. The new perinatal center called back 10 minutes later to say that it just so happened to be the day the Cardiologist from Cincinnati was teleconferencing in for heart echo's and they just had a cancellation.

My friend Natalie and I rushed down there and my husband met us. After another anatomy scan and a heart echo the cardiologist confirmed the diagnosis. He told us we had 3 options. We could terminate the pregnancy but I was running out of time and would have to do that within a week, we could carry to term and keep our baby boy comfortable as he passes or we could have him go through a series of 3 open heart surgeries... the first being at birth.

My husband and I were devastated. How do you choose whether you baby lives or dies. How are any of those choices "Good" options. Within one day we went from choosing blue or pink to life or death. They said they recommended doing an amnio to make sure there were no other birth defects. We agreed and they did that the same day. The cardiologist asked that we come to Cincinnati the following Tuesday for another heart echo done by their staff and a consultation. We agreed.

The next few days waiting for the trip to Cincinnati were very difficult. We got our amnio results back and they were Normal. A part of me wasn't as happy as I should of been because I knew that if there were other problems and he had no chance at a life then the decision would have been easier. I was in such a state of shock and confusion I just thought if this baby was not meant to live then I wished God would take it out of my hands. I prayed for an answer.

We went to Cincinnati where they told us he did have HLHS and also a restricted atrial septum and a blood clot in his left ventricle. The blood clot was not a concern but they were concerned about the atrial septum. The staff there was really great. They were so compassionate and understanding. I really appreciate that since it was such a difficult time for us.

After looking into our options I knew that terminating the pregnancy was not an option for me. If Jacob was not going to make it I was at least going to say goodbye to him and give him a proper burial. A week or two went by feeling hopeless and thinking I was going to loose my little boy. However once I started doing more research I found other parents of HLHS babies on facebook and read their stories of survival. Seeing these babies filled me with hope. The more I felt my little boy kick inside of me the more I knew I had to fight for him. I had to give him a chance. It was like Jacob was telling me that he was a fighter and that he wanted me to give him that chance.

I prayed for a clear decision and it came. Now the battle begins. The battle to save baby Jacob.

1 comment:

  1. Hi! I just wanted to leave a comment to let you know that I COMPLETELY understand what you're going through. Our son, Chase, was born Oct. 26th with HLHS. We also received his diagnosis at my 20-week ultrasound. The first 48 hours after the diagnosis were the darkest moments in my life. I spent so much time in tears and questioning why this was happening to me. It has been a difficult journey but God has been faithful and our sweet boy is quite a fighter! We are so blessed! Just know that God chose you and your husband to be Jacob's mommy and daddy for a reason! He has a wonderful plan for your family!

    If you have any questions or need to vent/talk, please feel free to contact me. You can read our story at

    You and your family will be in my thoughts and prayers!!!