Susannah, born 2004
We 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 after the technician told us it was a girl but kept looking at her heart and left the room. She came back with a doctor who said it looked like my baby girl had HLHS and wanted me to see a pediatric cardiologist. He confirmed what was suspected and recommended to deliver at MUSC. I was so sad especially because I lost my mom to a cancerous brain tumor three months before I found out I was pregnant. It felt like my whole world was crashing down.
Susannah was born on November 22, 2004. She was two days old when she had the Norwood. She made it through surgery with flying colors but later got fluid around her heart and had to have a drainage tube placed. She amazed everyone how well she did.
The hospital was 200 miles away from home so I had to spend four weeks away from home and from my two boys. It really affected them and me. Susannah got to come home right before Christmas.
She did very well until the end of January 2005. Her color wasn't quite right and her pediatric cardiologist said to bring her to the hospital. Her oxygen saturation levels were in the 50's and they couldn't figure out what was wrong. So we returned to MUSC. After doing a catherization, they found a blockage and decided to go ahead with the Glenn. She was only two months old.
She did very well. About a week later, she developed a fever which was caused by an infection in her blood so she was given antibiotics, one after another. Then she had a chyle leakage so she had to have another surgery to correct this. It worked and finally after three months in the hospital and feeding issues (she required a special formula because of the chyle), she got to come home the end of April.
Although she has a leaky valve, she is doing well. She still has the g-tube but hardly needs it. With all that she's been through, 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 endure all she has in beating the odds. We just take it one day at a time - that's all you can do. I still cry thinking of the future but to make it through, you can't think "what if". So, we stay in the moment.
Story by Susannah's mom, Brooke - South Carolina
Tara, born 1992
Ryan, born 2003