Ashtyn Elizabeth

Our daughter Ashtyn Elizabeth was born on August 26th, 2003 with HLHS and Turner's Syndrome. Ashtyn was diagnosed at a 26-1/2 week ultrasound, so we had almost 3 months to prepare for the worst.

Before Ashtyn was born, my family and I were able to meet with the surgeons in New Orleans, LA. We were told that his success rate was 85-90% for the first surgery compared to the usual 50/50 chance, so we were happy. Later we were also informed that because she had Turner's Syndrome, the mortality rate for her first surgery was 30%.

The day Ashtyn was born our family was excited, yet nervous. Things went well and her pediatric cardiologist said that she was in the best possible shape that she could be in! The next day August 27th, she was flown to New Orleans. My mother-in- law went with her until her dad and I could get there. She was extubated before we got there and I was able to hold her for 2 weeks before her surgery.

At 22 days old, on September 17th, she had the Norwood procedure done. They were unable to take her off bypass so she was put on ECMO to give her heart a rest. One week later they attempted to take her off ECMO and after an hour off she failed. We were told that they didn't know what was wrong, but most children who fail coming off of ECMO are never able to come off. This wasn't the case for our little angel. They figured out that the shunt that was placed in surgery was too big and they were going to clamp it off before attempting to take her off a second time. On September 20th, the doctors told us that they had to take her off, because she was showing some signs of kidney failure. They clamped off the shunt and everything went well.

The weeks went by and the doctors attempted to close her chest 3 times, but every time the tried her heart would stop. However, they were to close the wound a few mm at every attempt, so the doctors came to the conclusion that they were going to have to close her chest a little at a time, and they even threw around the idea of having a plastic surgeon put a muscle flap over her heart.

One month had already gone by since surgery, and Ashtyn eventually caught an infection. This put a halt on all plans to close her chest. Cultures that were taken from all of her lines came back positive for infection and she received 2 different antibiotics for those, but it took 7 days for the cultures from her chest area to grow back a rare fungus that was hard to treat. They started her on strong antifungal meds in hopes that it didn't spread. It didn't spread but she bled from her aortic valve 3 times, because the fungus was eating away at her tissues.

7 1/2 weeks since surgery and having her chest open Ashtyn bled for the 3rd time on November 7th. The doctors were convinced that they had to close her chest fungus or not for her to have the best chance of survival. Later that day at around noon, Ashtyn was taken into plastic surgery to have a muscle flap placed over her heart. The surgeons came to tell us that they were only able to cover the top half of her heart, because her heart rated dropped to the 60's. They would watch her the next couple of days and decide when the were going to close the bottom half.

Early the next morning we got a call from Ashtyn's nurse. He said that her pressures were dropping and they had tried to up her meds but she was not responding. We rushed in to see her and spent her last 4 hours here on earth by her bedside. She amazed all of her doctors and nurses that took care of her. Ashtyn was the strongest little girl and we miss and love her dearly. I can't wait for the day I will meet her in heaven, but until then I want to help further research for congenital heart defects.