Susannah

Susannah's Story

My husband and I were very excited when I went for my first ultrasound as we have two boys and hoped for a girl. I knew something was wrong when she kept looking at the baby's heart. She told me it was a girl, looked at the heart again, and left the room. She came back with a doctor who said it looked like my baby had hypoplastic left heart syndrome and wanted me to come back to see a pediatric cardiologist. He confirmed what was suspected and recommended we follow up at MUSC to make sure. So, we traveled 200 miles away for a second opinion. The doctor there said the same thing and we decided to deliver her at MUSC. I was so sad, especially because I had just lost my mom to a cancerous brain tumor 3 months before I found out I was pregnant. It seemed like everything was all going so wrong. I was just numb and didn't know how to feel one moment to the next.

Susannah was born November 22, 2004, at MUSC. She was 2 days old when she had the Norwood. She made it through with flying colors. The only problem she had was fluid around her heart and she had to get a drainage tube placed for about 3 days. She amazed everyone with how well she did. I had to spend 4 weeks away from home, my husband, and my two boys. Thank God for the Ronald McDonald House!!! It really affected all of us. Susannah got to come home right before Christmas.

Susannah did very well until the end of January 2005. Her color wasn't quite right and her cardiologist said to bring her to the hospital. Her oxygen 'stats' were in the 50's and they couldn't figure out what was wrong, so it was back to MUSC again.

There she got a heart catheter and they found a blockage. Her oxygen saturation dropped into the 30's and the doctors had to rush her to surgery. They decided to go ahead and do the Glenn procedure - she was only 2 months old.

Susannah did very well. About a week later she developed a fever. She had gotten an infection in her blood and was given one antibiotic after another. Then she started having a leakage of fluid around her lungs called chyle. She had to get another surgery to tie off the duct that was leaking the fluid. It worked and she fought off the infection. Finally after 3 months in the hospital, feeding problems (she had to be on special formula because of the leak, it didn't taste good), and a G-tube, she got to come home at the end of April.

Although she has a leaky valve, she is doing so well. She still has the G-tube but hardly needs it. She recently had a heart cath and had a large collateral vein coiled off. I am so amazed at all she has been through, yet she still smiles so bright. I named her after my Mom, who was my hero, and my daughter is a strong little person just like her. I believe she has a great purpose in life to have endured all she has. We just take it one day at a time - that's all you can do. I still cry thinking of the future and what might happen. But, to make it through, you can't think about what could happen. We just take it moment by moment.

— Susannah's story was written by her mom

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