Monday's Memory 7

Today I begin to piece together memories from Matthew’s life. There are a lot of years that are a blur and so memories may be pretty sporatic and out of place but I’ll do my best. This first memory is very clear though…the pregnancy.

When we decided we were ready for a second child we kept saying we won’t have another heart defect and even if we do we can handle it. The doctors had told us up to this point that they didn't know if heart defects were genetic and it is unusual to get more than one in a family. Our experience with Joshua was pretty easy actually. Man, were we wrong!

I had the usual ultrasound at 20 weeks. I can still hear the technician’s voice saying, “Four chamber heart, looks good!” Big sigh of relief. But, when I went back to my OB for my next check up he said, let’s do the level 2 ultrasound, just to be sure. I am grateful he thought to have us checked out better. (We could have taken him home after birth and we SOOO under-react to everything that he would have died.)

In those next couple of weeks I was very weepy and could not figure out what was wrong. I remember sitting at a Relief Society Saturday meeting and just worrying but didn’t really know about what. I think I was being prepared for what was to come.

At this point, I wasn’t so sure that everything was going to be all right. Mike still was though and so I went to the ultrasound alone. SO DUMB!!! (Don’t ever do that!) The technician began the exam and very quickly, I knew… She said “Rebecca, there is something wrong with the heart. I’m going to finish taking some pictures and then I’ll have the doctor come and talk to you.” I was devastated. I waited in silence for what seemed like forever staring at that stupid screen trying to see what could be wrong. She finished and then the Perinatologist came in. She looked at the pictures and took a few more and then had me get dressed and met me in another room. I knew this couldn’t be good.

Her explanation went something like this… Your baby has Hypolplastic Left Heart Syndrome. It’s too late for an abortion so these are your options. You can take your baby home and watch him die. We can try a heart transplant…which…finding an infant healthy heart in time is near impossible. Or, we can do a series of 3 surgeries to re-route the blood flow. He has an 80% chance of living. Do you have any questions? I was so overwhelmed, I couldn’t think of any questions…except, Are you crazy? My care was switched to the Perinatologist’s office and out the door I went.

The second I stepped out that door my eyes filled with tears and I bawled all the way back…a 30 minute drive. I couldn’t hardly see where I was driving. I had to pick up Joshua at a friend’s house with swollen eyes and all and then headed back home and cried some more. The worst part was I had to be the one to tell Mike. That was so hard to do. (Mike has learned to be ready when I call after a doctor’s appointment…I’ve been the bearer of bad news MANY times since…It doesn’t get any easier either!)

The next few months I had to go in weekly for stress tests and more ultrasounds. It was always fun to watch the baby growing and moving…I could see he was strong. I really struggled those few months though. I was trying to trust God…thought I was trusting God…but just could not feel that peace I so desperately wanted to feel; that peace that I felt when we had gone through this with Joshua. I REALLY wanted to know if my baby was going to live and for how long. After much pondering, some murmuring, and many tears and prayers…I was finally able to give up my need to control the situation. It was just before we left for the hospital because the only thing I knew for sure was that there was not a single thing that I could do. I HAD to trust Him.


This terrible picture is all I have of me headed to the hospital trying to be brave.

(What in the world is Hypoplastic Left Heart Syndrome? One of the most complex and rare congenital heart conditions is hypoplastic left heart syndrome, a condition in which the left side of the heart is critically underdeveloped.
If your baby is born with hypoplastic left heart syndrome, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body.
Matthew lives on only two heart chambers, the right atrium and the right ventricle. His official diagnosis was Hypoplastic Left Heart Syndrome with no visible mitral valve or left ventricle, aortic atresia and severe hypoplasia of ascending aorta with mild tricuspid insufficiency.)