Welcome to our CaringBridge website, Bionic Ears, On-X heart. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Lucas is a complex kid, having made his way into the world on his time, in his own way. He's a typical 9-year-old boy, who excels in school, loves all things technology, plays the piano, participates in cub scouts and swims competitively. He is super loyal, dangerously curious, wildly adventurous and very strong-willed. He's also a little miracle, defying many odds and having experienced much in his short life already.
Lucas was born a month early and admitted to the NICU with respiratory distress. While there, we soon learned that he had a heart murmur and that he did not pass his hearing test. The nurse assured us that his hearing test results could be due to his early arrival, but encouraged us to follow up in a month with a more sophisticated hearing test. In regards to his heart, the neonatologist sternly warned us that if we did not follow-up promptly with a cardiologist, that our baby would die. Those were very strong words for a first-time mom, and I was a wreck. I mean, I was discharged on Christmas Day without my new baby who I thought was going to die.
Although the nurse assured us that it was probably just fluid in his ears, at 2 months we learned that he was profoundly deaf. His heart condition quickly took a back seat. At that point we had been to the cardiologist with a more specific diagnosis: bicuspid aortic valve with aortic insufficiency. We were told that Lucas would eventually need to have his heart valve replaced, but not until he was well into adulthood. We felt a huge sigh of relief, and could focus on Lucas' hearing.
In his first three years, Lucas had 6 surgeries, 2 sedated MRIs, a CT scan, 2 five-day hospitalizations in addition to his 8-day NICU stay. The most significant of those surgeries was surgery #2, his first cochlear implant surgery. Dr. K. at the Children's Hospital of Philadelphia gave Lucas the gift of sound at 12 months and 3 days old. It was the easiest hard decision of our lives, and we haven't looked back. By the time he was 2, he was listening and speaking like his typically-hearing peers. He went from profoundly deaf to a mild hearing loss thanks to his cochlear implants and is currently mainstreamed in his neighborhood school 4th grade classroom with few interventions other than the use of personal FM system and short visits from a teacher of the deaf to work on advocacy skills. He is still deaf and always will be, but his bionic ears give him amazing access to sound. The journey has been long, with lots of therapy and early intervention, but we have achieved a great sense of normalcy at this point. You can read more about Lucas' hearing journey here: http://lifewithlucasrc.blogspot.com/.
Fast forward to this year, to June 2017. Lucas had his yearly appointment with his cardiologist, as we have done since diagnosis, following up every 6-12 months to chart his heart function and progress. I have noticed over the past several years that although stable, his heart condition has been worsening. In the letter addressed to his pediatrician on 6.21.17, his conditions list reads as:
1. bicuspid aortic valve
2. mild aortic valve stenosis and moderate to severe aortic valve insufficiency
3. moderate dilation and mild hypertrophy of the left ventricle
4. moderate dilation of the aortic root
His cardiologist, Dr. Vogel, reads the initial heart echo, then sends it to be read by the team experts. He also has spoken for years about wishing to perform a cardiac MRI, but is unable to due to the magnets in Lucas' head for his cochlear implants. So, he brought Lucas' case to 30 of his colleagues at CHOP, and as a team, they decided that the time to intervene on Lucas' heart valve is now. The deterioration over the span of the past year equates to that of his first 8 years. We learned this information on August 25.
Lucas' surgeon will be Dr. Stephanie Fuller. We have not met her yet, but had a lengthy phone consult during which she explained to us our options, the nature of the procedure and thoroughly and patiently answered all of our questions. Surgery will be performed at the Children's Hospital of Philadelphia and we know that Lucas will be in good hands.
This is our story, being shared with Lucas' permission. Thanks for reading.