Faye Wilson has kindly sent Alexanders story to me for everyone to read.

Our son, Alexander Wilson, was born Sept. 12, 1995 in Lancaster, Ohio (USA). He was diagnosed HLHS within 24 hrs of his birth. What follows is his story and how he is fighting through.

When Alex was born he was given a 9 on his 1 minute apgar and a 10 on his 5 minute apgar. Approximately 5 hrs after he was born he started getting fussy. Being new parents we thought he was hungery, but he wouldn't eat. Our nurse came in to go over his circumcision papers and she took him into her lap to try to calm him down (mom and dad were quite unsuccessful at this point). I couldn't do much as I had just undergone a c-section. In the middle of discussing the circumcision our nurse got a funny look on her face. She put Alex back in the bassinet and said his breathing had changed rhythm and she was getting the head nurse to come look at him. After a few minutes of his being examined by the second nurse (who just happened to have been a respiratory technician prior to going to nursing school) he was taken into the nursery under the pretense of giving mommy and daddy a few hours of much needed rest. At our hospital your baby stays in your room 24 hrs unless there is a medical condition preventing this.

By the time Children's Hospital came to transport him he was in full respiratory distress and had to be intubated. I don't know about other Children's Hospitals but ours will take a picture of your child just prior to intubation so the parents have a picture "just in case". Yet they were telling us not to worry. The RN on the transport team told us in no uncertain terms that he was not doing very well. In fact, she told daddy that since mommy couldn't leave (because of the c-section) they felt that daddy and the grandparents should follow them to Children's as soon as possible. They were not sure he would survive the transport!

The Neonatal ICU attending physician ran the exact same battery of tests our pediatrician ran and could not find the cause of his failing. By chance the NICU/PICU attending cardiologist walked in just as the attending was giving up hope. On a whim me motioned for the cardiologist to join him at our son's bedside. Dr. Fisher (our cardiologist) took one look at our son and ordered an echocardiogram. He said Alex looked like he was suffering from Hypoplastic Left Heart Syndrome, and he was right! Later we find out from Dr. Fisher that Alex was within minutes of expiring when Dr. Seguin called him over to consult.

We were given three options: 1) infant transplant, which meant moving to Loma Linda, California and praying he received one in time and that he wouldn't reject it shortly after that!; 2) passive euthenasia, in the USA they have to give this option to parents legally. There may be a religious conflict that would stop the parents from letting the child be operated on; and 3) the 3 stage surgical procedure perfected by Dr. Norwood. Gee, let me see... Obviously we opted for the three surgeries. Alex's Thoracic surgeon trained under Dr. Norwood so we felt quite comfortable with him. We are also very fortunate. Dr. Daniel Cohen is a nativ of South Africa and he just happens to be ranked as one of the top surgeons nationally. He explained to us the history of the three surgery procedure and held nothing back. In 1984 the procedures were considered "experimental" by the FDA (Food and Drug Administration), and this was the first year the surgeries were available! By 1988 they were considered legitimate procedures - whew! And in 1991 Dr. Cohen came to Children's Hospital (Columbus, OH) and brought the surgeries to Ohio! As far as he knows there are no surviving HLHS children from the 1984-1988 era, and he is hard pressed to find any beyond the age of 7 years of age. So are we and we have been searching for 21 months!

Alex underwent the Norwood procedure on Sept. 20, 1995 at 8 days of age. We came home from the hospital on Oct. 20, 1995 - exactly one month later! On January 30, 1996 Alex went into congestive heart failure and spent a week in the hospital. He came home on oxygen (to gain weight) and a little over a week later he underwent the Glenn procedure. The second stage surgery took place on Feb. 12, 1996 - which just happened to be his 5 month birthday! We came home one week (7 days!) later on Feb. 19, 1996! He has grown just fine. He has a hard time playing for any length of time, but he is good about calming down when we make him stop playing for a while! He loves grandpa's pool, and the only time he will not listen to us is when we are trying to take him out of the pool!

On June 19, 1997 Alex underwent the Fontan procedure. It was a rocky start. As Dr. Cohen put it, "it just wasn't an Alexander type of surgery". While on the heart/lung bypass machine everything seemed to work just fine, but one never knows. Once he was weaned off the bypass machine he started having problems. It seems the passageway between the septum and the baffle was too narrow and his lungs were getting 0% blood. We were told they had to go back in or he would die. 2 hours after coming off the bypass machine he was put back on it, and he was opened up again! They removed part of the septum and it seemed to do the trick! :)

Sometime between June 23 - June 24 he had a stroke. They believe a small clot went to his brain and was followed by a larger clot. the smaller clot took his speech and the larger one took the motor skills in his right arm. We came home (with Alexander) on July 1, 1997 - less than two weeks after his "double" surgery and his stroke. He has almost 100% of his words back, he just has problems closing them. For example, he wanted to look at the fish in the aquarium and prior to the surgery he would say, "I want look fish". Now he just points and says, "fi". He has been followed, developmentally, and his early intervention teacher had him at 25 to 28 months of age in general development and 30 to 35 months of age in speech development. It hurt to think that all of his beautiful words were gone, but daddy and I taught him what he knew the first time - we can do it again! We are just thankful that he is still with us! As for his arm. He is reaching for things with his right arm and he has an "elementary" grasp. Almost clublike. But he is using it more and more, and he has been putting weight on it. Alex will be undergoing many months of long-term physical and speech therapy to correct what the stroke took away, but the neurologist is expecting 100% recovery of everything!

Prayers, ours, our family's and our church's, not to mention prayers of strangers who have heard Alex's story, have helped us through so much and we are so thankful to everyone. We are reminded daily that our son is a gift from God, and we thank Him - daily if not hourly - for giving us this precious angel to raise.

My husband and I actively search out new HLHS parents that come into Children's Hospital in Columbus, OH. We have made many trips to Columbus to sit through surgeries with other families and we will continue to support others. We are more than accessible and we welcome questions and correspondences from other HLHS families!

God bless you all!

Faye Wilson ad911@seorf.ohiou.edu

snail mail can be sent to:

5808 Rossetter Road #2
Albany, OH 45710 USA