Jun 13, 2012
I want you to meet my son Josh. He was born with a Congenital Heart Defect known as Hypoplastic Left Heart Syndrome (HLHS). A condition that’s 100% fatal if not addressed with a series of open heart surgeries or transplant. Essentially, the left half of his heart never properly developed and science can’t yet fully explain why this happens to 1 out of every 5,000 babies.
I remember when my wife Allison and I learned that Josh would be born with HLHS at his 20 week ultrasound, the news was absolutely devastating. After the initial shock, I didn’t know how to react, didn’t know what to do and most importantly, didn’t know what to expect next. Would Josh survive? Would his life be filled with suffering? How can one possibly prepare for such a circumstance? I was angry and scared.
It was necessary that Josh be born at UCSF Children’s Hospital so that he could receive treatment from the Pediatric Cardiothoracic Surgeons there. He underwent a major reconstructive open-heart surgery the third day of his life. The hospital stay lasted 6 weeks, where Allison and I were at his bedside around the clock. I remember many long nights during that time, sleeping on the couch in the waiting room (if I was fortunate enough to not get discovered by the security guards).
After Josh recovered from the first procedure, he underwent the second operation 3 months later (another 6 week stay). The third and hopefully final open-heart was completed shortly after Josh’s 3rd birthday, in the spring of 2011. To say this was challenging for me is an absurd understatement. As a father and husband, I did my best to set a strong and optimistic example for my family, but there were many moments during these experiences when I felt completely helpless.
We don’t know what his future will hold, but Josh is now 4 years old and his heart is functioning well. We have made it through some of the more difficult obstacles regarding his health. Looking back on these experiences, I can say that without a doubt, the most challenging aspect of Josh’s condition was not knowing what to expect, the uncertainty of his future.
I’ve learned that with adversity, immense blessings can present themselves. Since my early 20′s, I’ve been working with amputees as a prosthetist and while I’m not an amputee myself, my experiences with Josh completely changed the way I approached my work because I learned the importance of managing my patient’s expectations throughout the rehabilitative process. By removing much of the uncertainty and fear from the process, the challenges become smaller, more manageable, and this makes a world of difference.
Little by little, day by day, obstacles that once appeared insurmountable become possible. I believe that life can become sweeter, more rewarding and richer as a result of overcoming the adversities we’ve faced. It’s with this spirit that we’ve created limb-loss.org. If you’ve been affected by limb loss, our mission is to guide your expectations through each step of the rehabilitative process.
Our vision is to establish limb-loss.org at the most comprehensive and contemporary source of informational, educational and social resources for the amputee population. No matter where you are in the rehabilitative process, whether you’re a new amputee, a caregiver, a related health-care professional, or an experienced amputee, we’ll strive to provide you with valuable resources to improve your quality of life.
Together, we can overcome anything.
Jon Smith, Executive Director