In January 2000, we went to our 20 week ultrasound, assuming everything was fine. We were anxious to find out if the baby was a boy or a girl, and get on with our day. But, within just a few moments, our minds turned from which color to paint the nursery, to whether or not we'd even have a baby to bring home.
The perinatologist who performed the ultrasound noticed right away that there was a problem with the baby's heart. He told us that it was a condition called Hypoplastic Left Heart Syndrome (HLHS) - a term neither of us had heard before. We were to meet with a pediatric cardiologist who would perform a fetal echocardiogram (an ultrasound of the baby's heart) to confirm the diagnosis and discuss our options. We were far too anxious to wait the two days for the appointment, and immediately drove home from the ultrasound appointment and got onto the internet to find out more information. Keep in mind the internet was not at all what it is today.
At first, we came across outdated information which did not offer much hope for these children. We thought that it was a death sentence and were very discouraged. We then came upon heart transplants as a treatment for HLHS. We were ecstatic - at least there was hope. Eventually, we discovered information on the 3-Stage Operation, beginning with the Norwood procedure. The more we dug into information, the more hopeful we became that our baby might live. The success rates for the surgeries had increased dramatically over the last few years.
By the time the diagnosis was confirmed by the pediatric cardiologist two days later, we were already well-versed in the treatments and success rates for Hypoplastic Left Heart Syndrome and had already decided to pursue the 3-Stage surgery instead of a heart transplant. Then, we had to choose a hospital at which to have the surgery performed.
After much research on the internet, meeting with local physicians, and speaking with our insurance company, we decided to travel across the country from Southern California to the University of Michigan. We would deliver the baby there, and have the Norwood procedure performed shortly after the baby's birth.
We flew out two weeks before our due date, and delivered our son, Braedon, in June 2000. The Norwood procedure was performed 8 days later by Dr. Edward L. Bove. Braedon remained in the hospital for 3 weeks, and we were able to fly him home on his one month birthday. For the first several months, Braedon was not very energetic, and had trouble eating, which is very typical of heart babies.
When Braedon was 5 months old, we flew back to Michigan for his second stage surgery. He was discharged in only one week, and recovered at home very quickly. The second stage surgery takes a lot of the workload off of the heart, and we saw almost an immediate improvement in his energy level, and eating ability.
In April 2002, Braedon had his third (and hopefully) final heart surgery. We again went to the University of Michigan for his Fontan operation. Just one week after surgery, Braedon was running up and down the halls of the hospital and discharged after only 8 days.
Today, he is doing amazingly well and is 18 years old - a milestone we weren't sure we would ever see. You would never know to look at him that he's had three open heart surgeries. We hope that other families provide inspiration and hope from our story, as well as from the many, many other HLHS survivors.
First and foremost, we thank Dr. Edward L. Bove, Director, Division of Pediatric Cardiovascular Surgery, for his dedication to saving children with congenital heart defects. His skill, commitment and caring are truly amazing. We also thank the entire staff of C.S. Mott Children's Hospital at the University of Michigan for the exceptional level of care they give to each child. In addition, we thank the hospital and, in particular, Sarah Leroy, Louise Callow, and Kristen George for creating an easy-to-understand booklet on HLHS for parents. Much of the information on the surgeries contained on this web site was gleaned from this exceptional work. Special thanks goes to Barb Shaltis, Clinical Social Worker, for all of her help in coordinating appointments and travel for many parents, and for her input on this web site.
Thank you to Dr. Damon Masaki, Perinatalogist, for diagnosing Braedon's condition at the 20-week ultrasound, allowing us the time to prepare for Braedon's arrival. And, thank you to Dr. Richard Swensson, Pediatric Cardiologist, and his staff for their continual follow up care of Braedon.
We'd also like to thank all of our family and friends for their love and support as we went through this journey. Their words of encouragement helped immensely.
Thank you to Mona Barmash, President of The Congenital Heart Information Network (TCHIN) for creating such a tremendous resource, and an avenue for parents of children with heart defects to communicate and share their experiences. Through the TCHIN HLHS online support group, we have received much-needed guidance, support and information. Thank you to all of the families who have shared their lives with us. Your input has been invaluable to us personally, as well as in the creation of this web site. Thank you also to Theresa Blanco for her input into the questions to ask the insurance company.
Thank you to all of those in the medical field, including many pioneering surgeons who continued to believe that living with "half a heart" was possible.
Finally, we are deeply grateful to the many families who allowed these surgical procedures to be performed on their children over the last 3 decades - some of whom weren't as fortunate to bring their babies home. Because of them, the surgeries have been constantly improved and the success rates have risen dramatically. Braedon and many other children and adults with HLHS are alive today because of these courageous families.
With our sincerest appreciation,
Ron and Debbie Kamm
