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A Lifesaver - Submitted November 9, 2000
Return To Pooh Corner is not just one of our family's favorite albums; in our hearts it has been a lifesaver. Our daughter Courtney was born with severe heart defects (Hypoplastic left ventricle, double outlet right ventricle, Transposition of the great arteries, Pulmonary stenosis, Mitral stenosis, VSD, ASD). Initially we went through the "why us syndrome"? Neither of us drank or smoked, we were both very healthy.
She was born at Friendly Hills Hospital in Cerritos, California and lucky for us the nurse noticed a problem in her color and put her on oxygen right away. In a split second we went from living out one of the happiest moments of our lives to one of the scariest. They took our daughter to another room and told us not to worry they just needed to run some tests. Within the hour we were given the bad news. The doctor could tell by listening to her heart that there were problems that may require a specialist. A helicopter was on its way from Loma Linda to pick her up.
We were devastated. We were given one last moment to spend with our daughter but we could not hold her as she was in a special oxygenated apparatus. As we looked at her she looked so beautiful and normal, it was difficult to comprehend the situation she was in. It was very difficult to let them take her away and there was no room in the helicopter for me to be with my daughter. My husband made the drive to Loma Linda and waited painfully for several hours. After finally speaking with her doctor at Loma Linda, he learned she was going to have surgery (cathitarization) the following day to fully understand her condition but they new it was serious. The next we were told of her condition and given three options. We would have to decide on one of the three options:
1) Heart transplantation
2) Palliative surgery
3)Do nothing, take her home
Heart transplantation was still in its infancy. There were lots of different types of complications and there was a concern over a drug that had to be taken to suppress the immune system. There was also the potential problem of finding a donor. The palliative route meant she would need at least three open heart surgeries and the surgeries would not repair her heart, only make it functional to an extent that could range from almost normal to only sustaining life. Another problem with palliative route was that she would most likely not be able to be extremely active and her heart could fail at an early age. The third choice would mean that she would pass away within a couple of weeks. Unbelievably to us, many couples choose this option, but it was never an option to us. That night we cried and prayed for an answer to the greatest decision of our lives.
The next day we went to the library and studied up on congenital heart defects. Over the course of the next few weeks my wife and I spoke with several leading cardiologist and surgeons including Dr. Norwood, and Dr. Fontan both whom pioneered palliative heart surgery techniques that are standard today. After all our reading, discussions and praying, we decided to go with the palliative procedure.
The palliative route meant she would have, at a minimum, one open heart now and three more, one at age 2-3, one at age 4-5, and another in her early teen years. Dr. Bailey performed her first surgery, and everything went well. We had her home three weeks later. After a couple of months of recovery our daughter had two years of a seemingly normal childhood with the exception of several medications she needed to take, restrictions from fatty foods, and a little extra pampering.
That summer we flew to Bordeaux to meet with Dr. Fontan. Meeting the man who developed the procedure that would buy my daughter a longer and hopefully happier life was one of the greatest thrills. It was also very educational. He was a very kind man and was very helpful to my wife and I. When it came time for my daughter's second procedure we were thrown another curve ball. Dr. Lacks at UCLA had developed a procedure that would enable him to complete the Fontan with only the second surgery. This could mean one less operation for my daughter. We again consulted with several cardiologist and surgeons. The new procedure was a unidirectional Fontan. In our consultations with other cardiologist and surgeons few concerns were raised. We were very happy with our cardiologist, Dr. Spicer and our surgeon, Dr. Lamborti from Children's San Diego, but given the possibility of one less surgery we were leaning toward Lacks. The procedure would only be done if pressures in the lungs were 7 or 8. They wouldn't know until they started the operation. If the pressures were to high after the operation began, the second phase of the normal Fontan would be done.
We again did allot of praying and decided to go with Dr. Lack's. We felt that if it was meant to be her pressures would be low enough. Turns out they were not, and Lacks performed the second stage of the normal Fontan procedure. The fact that her pressure was too high turned out to be a blessing as patients who have had the unidirectional Fontan have had severe complications and they are no longer practicing the procedure.
Our daughter was home within three weeks of the second surgery. The next three years were very happy for our family. Courtney was only in the hospital once for a couple of weeks with complications due to excess fluid. She had minor surgery and was back home in a couple of months. Other than the one incident during those three years, her biggest concern seemed to be her lips turning blue when she got cold. She seemed to be just as active as her older brother. In fact her mother was always afraid she was too active. The doctors assured us she would know when to quit and not to worry about it. It is funny how your perspective changes throughout these ordeals. Initially we felt we were cursed with her condition. Nothing could be worse.
Now that she was doing so well I counted every day with her as a special gift, and I have taken the same outlook with her older brother and her younger brother. Courtney had her third open-heart surgery almost two years after her second. This was her most complicated procedure. It was after this surgery that we began playing Return To Pooh Corner at Courtney's bedside during her recovery.
We would play the tape constantly and sing along as well. Courtney was heavily sedated the first two days post-op and while she was not completely conscious, we are certain the sounds of Kenny's special album were cheering our daughter's spirits. The lyrics and melodies of Pooh Corner have a very special place in our hearts and we feel they are partly responsible for the quick recovery of a girl with a very special heart. It has now been over six years since her last surgery and she is doing great.
She is nine and has played on a soccer team and does gymnastics. She is more active than most of her friends. Return To Pooh Corner is still one of Courtney's favorite CD's and she holds a special place in her heart for the music and the musician.
Courtney will need another open heart when she is a teenager and there are no guarantees that it will be her final procedure. There is a guarantee that every day we share with her she enriches our lives, the lives of those around her, and reminds us of the miracle of life. We will never be able to thank the people who have been a part of this ordeal enough. Our family and friends have been great. The doctors we have met with and who have helped our daughter were nothing short of geniuses and saints. A special thanks goes to Dr. Lamborti and Dr. Spicer. These men are not only great doctors, they are great friends who we will always have a special place in our hearts for, especially in Courtney's.
And of course Kenny, and his decision to create a musical piece that does more than just entertain. Courtney has been hounding us to take her to see Kenny in concert since she was 5, but we have felt she was too young. This Thanksgiving weekend her dream is going to come true, as she will be sitting with us in the second row for the Kenny Loggins Concert at Sam's Town. ~ Karen Merhab
Thank you for your letter. I'm sorry I didn't receive it before I played Sam's Town, I would have liked to meet you all. Send my love to Courtney.