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Braedon, age 3-1/2 |
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.
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. Then, we focused on choosing 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 to deliver our son and have his surgeries performed there.
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Braedon, 14 months old, |
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 some trouble eating, which is very typical of heart babies. However, he was not on any feeding tubes. We were just very diligent with bottle feeding him.
When Braedon was 5 months old, we flew back to Michigan for his second stage surgery, the Hemi-Fontan. At this time, he was also diagnosed with TAPVR (total anomalous pulmonary venous return)- his pulmonary veins did not connect to the heart properly. Dr. Bove was able to repair the pulmonary veins and do the second stage surgery in one operation and Braedon was discharged in only one week. 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. Within just a few weeks of the surgery, Braedon gained weight, and even gained pudgy cheeks! He became a giggly, smiley baby and was so much more energetic!
Thanks to other parents at C.H.I.N. we were told about FREE physical and occupational therapy for babies and children undergoing heart surgery through the Regional Center's Early Intervention program – (which is available regardless of income or insurance). We contacted our local Early Intervention program and had Braedon evaluated. We were shocked to learn that he was very delayed with his gross motor skills – at only 7 months old. Braedon received this free therapy for a year and a half. He crawled and walked late, but soon caught up with the help of his therapists. Being the show-off he is, he took his first steps at 18 months old – on Christmas Day in front of the whole family! His speech was also a little delayed, but he caught up quickly with speech therapy.
Braedon underwent the lateral Tunnel Fontan at age 22 months and was discharged in only a week (just like his 2nd stage surgery).
Today, Braedon is a 4-year-old little boy who is developmentally on target in every way. He runs, plays and interacts like other children. He loves kicking and throwing balls and playing golf. His favorite pastime is playing with snails, bugs, frogs and lizards – yes, he's a very typical boy!
— Ron and Debbie, Braedon's parents (California)
