Our story is probably the story of every family
dealing with a serious illness. A story of love, despair, fear,
anguish, and hope.
Our daughter, Jessica, has HLHS: Hypo-Plastic Left Heart Syndrome.
Jessica was born on February 9, 1987. At this writing she is 18
years old. She was diagnosed at two days old and transferred to our
local hospital. In 1987, our options were the same
as today: do nothing, transplant and surgery. I will admit that the
surgery was considered more experimental in those days but
transplants were even more of a risk.
When Jessica was one week old we were transferred to the Children’s
Hospital of Philadelphia. Dr. Norwood did her first surgery one week
later. In those days we stayed forever while they recuperated. We
were back in the hospital in May for a shunt revision. Next was her
Modified Fontan at two years and then a tricuspid valve repair a few
months after. Jessica also had a scoliosis issue that was
compromising her Fontan. It required a spinal fusion in May of 2003.
She did very well during all her surgeries.
Jessica had a very normal childhood if you don’t include the doctor
visits! She swims like a fish. She has a black belt in Taekwondo.
She cheered for two years and she has had a part time job for three
years.
Jessica graduated from High School this month. Her college
scholarship essays would make you cry. She wants to return the care
given to her by becoming a nurse. She already has a hot pink
stethoscope! College acceptance was a monumental event for our
family because it seems like just yesterday that we were in the
surgery waiting room. She will start college in the fall and will be
moving into the dorm. It will be hard to let go but I am confident
that she will be able to take care of herself. God has a definite
plan for each of these unique people.
If I can give you one piece of advice today it would be to live
every day. I know, you already know how to do this, but I mean
REALLY LIVE! Ask yourself today: Are we ok? What can I teach today?
How can I show love today? What would God have me to do today? When
each day is met with that kind of love… then… there are no regrets!
When Jessica was one week old we were transferred to the Children’s
Hospital of Philadelphia. Dr. Norwood did her first surgery one week
later. In those days we stayed forever while they recuperated. We
were back in the hospital in May for a shunt revision. Next was her
Modified Fontan at two years and then a tricuspid valve repair a few
months after. Jessica also had a scoliosis issue that was
compromising her Fontan. It required a spinal fusion in May of 2003.
She did very well during all her surgeries. 