Ashley Lauren Robinson
5/20/94 - 01/16/96

Not all stories have happy endings. Many children are not given a second chance at life because of the shortage of donors. Unfortunately, my daughter’s story didn’t have a happy ending.

Ashley Robinson was born on May 20, 1994 with a variation of HLHS. She had double-outlet right ventricle, mitral atresia and hypoplastic left ventricle. She was a beautiful 8 pound 14 ounce baby, and we were shocked when we were told of her condition. We were told that her best chance of survival was to travel to Boston to have a series of operations known as the Fontan Procedure. She was flown to Boston at 6 weeks of age to have her first surgery from which she recovered marvelously. At seven months, we again flew to Boston to have the first part of the Fontan (bi-directional Glenn), and the surgeon had to also place a homograft to repair her aorta, damaged as a result of the first surgery. Thus, she had a combination Glenn/Damus-Kaye Stansel surgery .

Ashley again did great and finally had a growth spurt. We had many happy hospital-free months until September of 1995, when our world came crashing down. On our third trip to Boston, we were told that Ashley was no longer a candidate for the Fontan and her only chance was transplant. Her right ventricle had become very enlarged and over-worked, and the homograft was leaking beyond repair.

Devastated, we were told that we should have the transplant close to home (in Tampa, Florida) because of the possible long waiting time - it was not feasible for us to stay in Boston for financial reasons, as well as the lack of family there. We chose a local hospital, and were immediately comfortable with the transplant team. It was obvious to us from day one that Ashley was in great hands , with a team that worked so hard to get a new heart for her.

Due to her rare blood type (O+) and high PRA (panel reactive antigen), we had to cross-match for a donor, thus were in for a long wait. On October 16, 1995, Ashley was placed on the waiting list for a heart. I cannot express in words the high level of stress and anxiety that we felt every single day while waiting. We were so filled with emotions and uncertainty and the waiting was often unbearable. In the meantime, we slowly watched Ashley deteriorate while we waited. It was a horrible experience and was so frustrating. It was so hard to see Ashley go through so many blood tests and she was so petrified by doctors and nurses - she was only 20 months old when she died, but she was all too familiar with the hospital. She was petrified of the hospital and it was really difficult to see her like that.

We were in the hospital twice while we waited for a donor, and I thank God there is a place called Ronald McDonald House. We were able to be close to Ashley while still feeling at home as much as possible.

We waited for three long months for a heart. While Ashley was in the hospital for a dobutamine boost in January, she got the RSV virus. This seemed to be all she could take - and she passed away on January 16th. We were by her side as she passed away and it was the most horrible and devastating thing I have ever experienced. At the same time, it was a beautiful moment, because she was no longer struggling for every breath and seemed so peaceful.

Looking back at everything, we went through some really tough times, but the night she died sticks out in my memory so much. We were surrounded by the people whom we had come to care so much about, and who cared so much about getting a heart for our little girl. The kindness and sensitivity shown to us by the staff and the transplant team will remain with our family forever.

I think of Ashley often and now can manage a smile. We did have a lot of happy memories, and they often overshadow the painful experiences. She was a beautiful child who taught our family so much about love and loss. I am so sorry that she had to endure all that she did, but I know she is no longer suffering and that brings me much peace.

return to Memorial Garden