Henry

Our son Henry was born on March 15, 2000. We had been trying to have a baby for well over 2 years so this day was so exciting for not only us but for our families. I had a difficult pregnancy; I had a calcified placenta and low amniotic fluid. I was on bed rest for over a month and Henry was born 3 weeks early. I had a C-section and everything was going fine.

Henry was born and he didn't start crying right away. I kept asking if he was ok and then finally, what seemed like an hour, but was only seconds after birth he started to cry. There was no NICU team there because he wasn't considered a preemie at 37 weeks.

He was taken over to be looked at and cleaned up and one of the nurses says hey you have to hear this murmur. So the pediatrician listened and he was like wow and went and got about 7 other people. They all came in and were talking about what a loud murmur my son had. And mind you I am still in the room on the operating table listening to this. I'm asking what's wrong and I'm telling my husband to go over and see what is wrong. I had one of the doctors tell me your son has a murmur but a lot of babies have one and not to worry. Henry was wrapped in a blanket handed to my husband and everything seemed fine.

The next day Henry's pediatrician came in and said, "I know you are aware of his murmur I would like to have a cardiologist look at it". The appointment was 2 weeks away!! We took Henry home and I didn't sleep, I just couldn't imagine what could be wrong and I thought he would die in his sleep. Finally the day came and I cried the whole way in to the cardiologist office. I just had a feeling. The doctor did an echo and confirmed that Henry had a bicuspid aortic valve and aortic valve stenosis. He would have to be monitored closely.

In October of 2001 we were told that Henry would need to have a valvuloplasty to open up his aortic valve. We were terrified. We had no idea what to expect. Henry had the cath and, thank God. everything went fine. He has some leakage but the leakage is mild to moderate. He has been put on enalapril and goes to the cardiologist every 6 months.  Henry will eventually need the Ross procedure.

March 3, 2004 Update

On February 27, 2004 Henry had to go in and have a cath done to check the amount of regurgitation of blood that goes into his left ventricle. They also needed to look at the aortic valve and see if it could be repaired or if he would need the Ross Procedure.

The cath went well but the results were not as good as we had all hoped. The regurgitation was severe but the valve appeared as though they may be able to repair it. They will need to perform open-heart surgery on him within the next few weeks. My heart is broken. I knew that he was going to need the surgery but I really didn’t want to think it would be at this age. Both my husband and I are very scared and sad. We are having the results sent to another cardiology office in Boston and are waiting for their opinion. I believe that they will have the same opinion but there is always hope they might have an idea that they didn’t think of at our hospital.

I will update you as soon as we find out what the next step is.

I will keep everyone in my prayers and please do the same for our family.