Sofia's Story
In 2002, I was due with a baby girl. at 18 weeks gestation, I found out that she had a heart defect called Hypoplastic Left Heart Syndrome and that she was very very small. I was told that with her heart in as poor condition as it was, she would not survive after birth, and would likely not even make it full term. On September 11, 2002, Faith Alicia was born still at 21 weeks.
In 2007 I became pregnant with my second daughter. I was told not to worry, that these things dont happen twice... a one in a million chance. Well, as fate had it, she was that one in a million. At 18 weeks gestation, she was also diagnosed with Hypoplastic Left Heart Syndrome. I was devastated. Sofia Jolie was born September 12, 2007 with half a heart but up for a good fight. She was born by emergency cesarian and needed to be recussitated..
At 6 days old, Sofia had her first open-heart surgery. This surgery was called the Norwood. It would be the first of 3 planned open-heart surgeries so that she might be able to live with her native heart. She did well with this surgery, and after a 6 week hospitalization, we brought Sofia home!
2 months passed, and every day was filled with Joy! Sofia had a heart catheterization done on January 10, 2008. She was not able to recover her oxygen saturation and one week later, on January 18, 2008, she had her second open-heart surgery. This surgery was called the Hemi-Fontan. She recovered well from this surgery as well, and in just 3 weeks we were able to bring her home again.
Sofi spent 8 months at home with us, playing, learning and bringing us true happiness. We celebrated her 1st birthday and had a big party for our special princess. On September 29, 2008, during a routine echocardiagram, Sofia was diagnosed with a severe aortic coarctation. Her blood flow to her heart and body was nearly cut off and we had to intervene quickly.
Sofia had an angioplasty on October 10, 2008. It was deemed to be unsuccessful, and we were told that they would try again in 6 weeks time. We were informed that if the next angioplasty was unsuccessful, she would need to be placed on the transplant list.
On November 21, Sofia had a second angioplasty. They were not able to bring her heart function back to where it needed to be, and made arrangements for us to meet with a transplant specialist.
I got special clearance to take Sofi on a flight to California. I wanted to take my baby girl to Disneyland, I wanted to take her to the zoo, I wanted her to see the ocean and the mountains. We had an amazing time there and she enjoyed every minute of it as well!
On December 15, Sofi seemed very ill, with fevers that wouldn't break and was very blue. She was admitted to the hospital, in chronic heart failure. Those first few weeks of her admittance were very scary. We didn't know if she would make it.
On December 27, 2008, Sofia was oficially listed on the transplant list, and we would wait for a new heart in the hospital until then. Sofi was placed on a continuous IV dose of Milrinone, which kept her alive. She improved enough with the Milrinone to be awake and smiling, playing and learning, once again. She captured the hearts of the entire staff on the 5th floor of Mott Children's Hospital in Ann Arbor, Michigan.
We waited, and waited and waited......
Sofi was growing more tired each day and I was losing hope that we
would ever bring her home.
On April 24, 2009, we received the news that would change things forever. Sofia had been offered a heart. An amazing gift that a grieving family was gracious enough to give. We are so grateful for that gift, words just cannot express it.
On April 25th, 2009, hours after her transplant, Sofia took a turn for the worse. Her new heart's function was poor and getting worse. The decision was made to put her on ECMO, which is essentially a bedside bypass machine. The plan was to give her heart some time to rest and build strength. The plan worked, and Sofi came back to us.
At this time, Sofia is still in the ICU recovering from her transplant. It is a very very slow process for Sofia, and not typical, but she is making progress. She had been on a ventilator for 58 days, and was finally extubated with success on June 22, 2009. So far, she is doing wonderfully and we hope to bring her home soon.
After spending the last 6 and a half months in the hospital, I have seen babies and children come and go with congenital heart defects. Some left in triumph, and some left as angels. Congenital Heart Defects kill more children and infants each year than all forms of juvenile cancer combined.
Babies should have mandatory echocardiagrams after birth, before they ever leave the hospital. Every life is worth saving. Please help us fight for more oversight, more resources and more research, so that these babies have a better chance at surviving, and parents will not have to bury their children because of this horrible disease.
Kristyn LaPres