Camden’s journey began twenty-four weeks before taking his first breath of fresh air. After a long family move from Kentucky to Washington State, it was brought to our attention during an ultrasound that Camden had a congenital heart defect known as Tetralogy of Fallot. We knew that within months Camden would need to have open heart surgery to correct the defect. Our family had no idea that this would only be the tip of the iceberg for years to come.
Camden Rau was born on February 9, 2015 via emergency C-section at Madigan Army Medical Center. Immediately after birth, he was sent directly to the NICU. When I followed Camden’s medical entourage into the NICU, I noticed something very strange. Camden’s head was extremely tall and elongated while having a very obvious skeletal deformity from his forehead to the back of his head. It was determined that he had craniosynostosis, which is the premature fusing of the bones in the skull. With these two serious issues identified, the Geneticist told us there was a very good possibly Camden had a genetic disorder, but it was too early to tell which one based on symptoms alone. So we waited.
One month later, Camden had his first open heart surgery at Seattle Children’s Hospital. He had a very rough recovery and spent approximately five weeks in the Cardiac ICU. Once he recovered, doctors then began to focus on Camden’s other issues. With sights set on a very evasive skull surgery, doctors agreed that Camden needed a G-Tube to eat because he was failing to consume enough calories by mouth. They also determined he would need to have another heart surgery to close a hole before the craniosynostosis repair to reduce the risk of brain damage and stroke. At nine months old, Camden finally underwent a full craniosynostosis repair from ear to ear to fix the shape of his skull and allow his brain to grow appropriately. After the skull repair, Camden’s blood oxygen levels could not stabilize and he required oxygen until he was approximately eighteen months old. We continued to wait and search for answers.
After the surgery, our family moved once again to Cleveland, Ohio. Camden was almost two. He underwent two eye surgeries in Cleveland to fix his droopy left eyelid to prevent him from going blind. We are extremely grateful that we moved to Cleveland for that short time because that is where we were able to conduct our genetic testing. While waiting for the results, the Army relocated our family to San Antonio to receive more efficient health care for Camden. During the move from Cleveland to San Antonio, we found out that Camden had the KAT6A Genetic Disorder. Our search for the cause was over, but what were we supposed to do now? There was very little research and doctors told us very little because they didn’t know anything about it. It’s at that point we were able to connect on the KAT6A support group on Facebook to get some answers.
This was such a relief to finally understand what issue has caused our son to experience all of these conditions, surgeries, pain, and suffering. Finally! Some kind of proof to show doctors who made us feel like terrible parents by saying our son was failing to thrive, accusing us of not feeding him enough, and constantly bringing up the percentile chart for height and weight to emphasize we are not doing our job. It explains why our son has never spoken a word and why there is a good chance he never will. It explains why he has so many physical issues. It explains the cognitive delays. It explains the brain damage. It explains why he is so tiny. It explains the constipation. It explains the poor muscle tone. It explains everything.
Just because we have come to terms with reality and have some answers does not mean we have given up hope. Camden is the definition of resiliency; bouncing back from everything life has thrown his way. Every day we wake up thinking this might be the day he says a word, or the day he can finally eat a normal meal, or that he will somehow overcome a physical obstacle he’s been dealt.
Camden has been the biggest blessing in our lives, and he has touched the lives of so many without even saying a word. He teaches us to be patient, loving, and selfless. He lights up every room that he is in with his amazing smile, caring nature, and his personality. He loves his mom, dad, big brother, and dogs. He has to emulate everything his big brother does, and then some. He loves sports, balls, trucks, cars, hitting keys on the piano, and watching the whales and fish at Sea World. He walks on his own, but he requires ankle braces to stabilize. He loves to jump on trampolines. He utilizes speech therapy, physical therapy, and occupational therapy each week to help overcome his deficiencies. He does communicate vaguely by pointing and using basic sign language skills, and he eats strictly through a feeding tube.
Recently this past week, Camden was forced to undergo yet another open heart surgery to receive a Pulmonary Artery Valve replacement. This surgery was supposed to happen in his late teens or early twenties, but his right ventricle was four times the normal size and the valve was leaking forty percent of blood being pumped to his lungs. Unfortunately, this will not be his last open heart surgery. The valve replacement typically only lasts two to ten years, but we will always expect the worst and hope for the best. He also had to undergo another operation today because his surgical site was infected, but we are looking to leave the hospital within a week or two.
Thank you for taking the time to read about my son.
We are honored to be Camden’s parents and very proud of everything he has accomplished so far in such a short amount of time.
We are happy to be a part of the KAT6A family.
Respectfully,
Steven and Shelby Rau
