Alissa Grimes with Coartaction of the Aorta (CoA) and Transposition of the Great Arteries (TGA)

This is our family’s story.

I got pregnant around February of 2009, it was a surprise pregnancy but I was so excited to be welcoming another little baby into our family. I have a 4 year old daughter and a 2 1/2 year old daughter. When I was 3 months pregnant my doctor put me on bedrest and I had to quit my job. My blood pressure was dropping drastically for no reason and I would pass out. It happened twice while I was driving. Tests were done on me to see if there was something wrong with my heart but everything came back negative. The doctors decided it was just from the baby pressing on my organs and such. At the end of October 2010 I went into labor around 4am. I had my daughter at 12:58pm. When she was born she was bright blue. The doctors knew immediatly that something was wrong. I had not seen her, I heard one cry and then nothing. Immediately there were 3 doctors and so many nurses I couldn’t even keep count, working on my daughter trying to find out what was wrong. They thought she had something in her throat and lungs so they kept sucking her airways, but it did nothing. After an hour of doing that they put her on oxygen since they couldnt get her levels over 40%. I still had not seen my daughter. I was terrified because no one could tell my what was going on. My mother was the one that finally told the doctors something was seriously wrong and they needed to call a helicopter to take her to a larger hospital. Within fifteen minutes my husband and I heard the helicopter land. They let me see my daughter for about ten seconds before they wisked her away to the children’s hospital an hour away. My mother and husband were already on their way to the hospital by car.

I waited and waited and still no one had told me what was going on with my daughter. I couldnt leave the hospital I was in so I had to wait for word from my husband. Around 8pm my husband called my, he was crying. Of course, the worst thoughts went though my head. After he reassured me she was alive and stable, he said the hardest thing I have ever had to hear in my entire life. My daughter needed surgery, major surgery. She was having her first surgery right at the moment to open a passage in her heart to allow oxygen to get to her heart. It was called a balloon septostomy. My husband told me that the doctors found many things wrong with her heart. The main problem was that her two main arteries were switched, which didn’t allow her oxgen to flow the way it needed to. She needed open heart surgery as soon as possible or she would die. She also had a Coarctation of the Aorta (CoA) which is a narrowing in one of her aortas. They also found a hole in her heart. The main problem was the Transposition of the Great Arteries. My husband stayed there until she was out of surgery and then came back home to be with me at the hospital.

At 7 a.m. the next day the hospital discharged me so I could be with my daughter. I will never forget the fear I felt when I saw my daughter in the hospital for the first time. She had so many machines and wires hooked up to her, she didnt even look real. The next 6 days the doctors and nurses built my daughter up to being so strong, it was scary to think that such a healthy looking baby would die unless she had open heart surgery. The balloon septostomy kept her oxygen levels around 90%, but it was only temporary. On November 6, we drove to the hospital after getting a call that Alissa was going into surgery around 8 a.m. We sat down with 2 surgeons that would be working on her and they told us the worst news that we have ever had to hear. After running more tests and more pictures of her heart, the doctors found that Alissa’s coronary arteries were abnormally small and their placement was wrong.

They told us Alissa only had a 10% chance of survival with the surgery and 0% chance without it.

So either way there was little chance that they could fix my daughter’s heart. They were originally going to fix her hole and CoA but because of how high risk the surgery was they decided to wait on those. My daughter went into surgery at exactly 8:12 a.m. She was in surgery for twelve and half hours.

When they were done with the surgery they came to tell us that it went good. They left her chest open because the swelling could kill her if her heart couldn’t handle it. They also wanted to be able to get back in immediately if something went wrong. A few days later, she was sewn shut and everything was working fine. The surgeons couldn’t believe that she had made it and how fast she was recovering. She had trouble feeding for a few weeks after the surgery but my husband and I were able to get her back on a newborn’s track.

She has been home now for a few weeks. She is on many medications, but is otherwise healthy. She is still in need of a few more surgeries but they are minor. She is over 3 months old and acts just like any other baby would!

You would never even know she had open heart surgery!

Wrote by Mari Grimes
February 2010

Mari Grimes has given CHD-UK permission to use the photographs on this page.