Saving Little Hearts

25 Weeks Pregnant

Normal Ultrasound Is What I Thought, Brad and I (Michelle) went in for the visit, Brad wanted to go just to make sure it was a boy and not a girl like I was teasing him it was. The ultrasound tech said all was fine but our babies arm was covering up his heart, No need to worry is what I was told, She decided we needed to be scheduled for a Level 2 Ultrasound. We made the appointment August 27th at 2pm.

Brad had a class in Hilton Head about 4 hours from home our appt was in Charlotte, So My mom and aunt went with me, The tech come in and spent quite a while never saying anything to me just kept going back and forth over the heart, She then looked at me and said that she was going to go get another tech to look, I knew then somthing was wrong, The tech came in looked for 2 minutes and said Meet Us In The Conference Room. That is where a genetic's counsler came in and said Your Son Has Hypoplastic Left Heart Syndrome. I had no clue what it was she then said it is fatal, I fell apart wanting to know what I had done, why was this happening she said she was not sure but, we needed to decide what we wanted to do. All this is pretty much a blur, We left the hospital and on the way home A nurse called back and said that the cardiologist needed to view the ultrasound before an official diagnosis could be given. An appt was scheduled for September 3d, 2003.

September 3 came, Brad,I and his parents went back for the appt, This time the cardiologist came in and explained to us in detail that our son did have HLHS and there were three options, 1st abort the pregnancy,2d compassionate care and the third was open heart surgery. Alot to think about so we asked questions, The doctor said that he would abort the pregnancy, Well after alot of us asking questions and him dodging the bullet we left the office.

Computer bound we become, We got on and started searching, Luck was with us, We found a family in our same area who had a son, She told us about the University of Michigan, The more and more she said we decided this is where we would go. We went for preop testing on October 3 and 4th and met with Dr Edward Bove, He was realistic but gave us hope. We planned on returning on December 3d, Dustin's due date.

Plans changed November 10th I went in for a rountine visit and they realized I had started dilating so off we went, We arrived on the 11th. I had weakly visits until November 26th when I started losing fluids, So I was induced.
November 27th Thanksgiving Day Dustin was born, he was perfect, out with a wisk they took him to go get settled, He did great those first two days, We were able to hold him and change his diaper things we hold for granted now, Saturday morning he was having a little trouble with higher saturations so they put him under a nitrogen tent, He continued to do well. His surgery was December 2 Norwood he went back at 7am and finally got back to the room at 4pm, He was off bypass and Dr Bove was happy with the surgery. we stayed with him until around 10pm when we switched off with my inlaws, Thinking all was okay. They called at 6:15 Wednesday morning and said we needed to get over there, I knew he was gone but I prayed, Dr Bove came in and said that he did everything possible but it was too late. We were in shock, we decided against an autopsy which now I wished we would have done, We no longer have our son but we were granted the happiest 6 days of my life. I just wished that no one would have to experience tragedy like we did, but it happens every day. There needs to be more progress made in finding out the cause to prevent congential heart defects in children.

Michelle