The story of Owen
Owen came into the world with a bang! Nothing went as planned and nothing ever did.
Owen spent 12 long days in the NICU. That is where his heart murmur became an issue to be looked into. At 3 weeks old during his first hospital admission the medical team had a sneaky suspicion that he had Williams Syndrome – all because of the heart defect they were looking at, supravalvular aortic stenosis. A test was sent out and it was confirmed a few days later.
Being told our son had a rare genetic syndrome was overwhelming but not as overwhelming as the medical journey we would soon embark on. Owen was released from that first hospital admission on home oxygen. 5 months later we finally found the culprit of his need for oxygen – congenital lobar emphysema. CLE is also rare, unrelated to Williams Syndrome, and is 1 in 30,000. Owen had his first surgery at 5 months old – a left upper lobectomy.
This procedure would be one of many to come. A few months later Owen was diagnosed with Hypercalcemia – very common in children with Williams Syndrome. This was diagnosed after an absent seizure at home and we spent almost a month working on Owen’s calcium levels and finding the right formula mixture for him. We were finally successful!
Owen had his very first heart catherization at 9 months old. He did astronomically well considering the entire team was nervous about putting him under. This was the test that would show us what all Owen needed surgery on. And as risky as putting him under anesthesia was we had no choice.
At 11 months old our family traveled from Texas to California for Owen’s first open heart surgery. The main culprits to Owen’s heart issues were the peripheral arteries inside his little lungs and only one man in the world could help him. So Owen went in for surgery and came out 18 hours later. His surgeon worked on the lung arteries, his supravalvular aortic stenosis, his pulmonary artery stenosis and closed his atrial septal defect. Owen was sedated and had his chest open for almost a month. Owen was not getting better and after 2 heart catherizations he went in for his second open heart surgery. His surgeon worked on his coronary arteries and shaved some muscle from his right ventricle. Owen finally got better.
Almost 6 months later Owen developed symptoms at home for SVC syndrome. His superior vena cava needed to be worked on and he went under once again. His medical team ballooned the SVC in hopes that he would not need a stent or another open heart surgery to fix this. The ballooning worked and we were truly grateful no other intervention was needed.
Owen’s last heart catherization was performed at 2 and a half years old. It was to see what needed to be worked on again as a third open heart surgery was scheduled. The team was baffled when the results showed much better news than anticipated. Owen dodged his third open heart surgery- for now.
Unfortunately it is very common for children with Williams Syndrome to have a very complex medical life especially in the early years of childhood. Our family has been blessed with phenomenal teams in two states that watch over Owen and work together to make the best plan for him. We still have a very long road ahead to where we can say we are safe and sadly there may never be a time where we are. But if it’s one thing we have learned from Owen is strength and bravery and that’s exactly how we will tackle what lies ahead!
Owen is now 3 years old and continues to be a force to be reckon with. He is developmentally delayed like many of his peers on milestones but has been in therapies since he was 3 weeks old when he was diagnosed with torticolis. These therapies have pushed him to achieve things that come so easy to other children his age. Developmental delays are common in children with Williams Syndrome but I wonder if they are more delayed because of his many medical issues early in life. Owen is full of love ready to share with those willing to give him a shot. And with a face like that who can resist? He especially loves his Big Sister who is incredibly patient with him. He loves to explore, run around with his medical walker and absolutely loves music. Owen has huge texture and oral aversions which we have found difficult to overcome lately. But he will get there, on Owen’s time. Regardless he will always be our strong, fearless little boy. Here’s to better years and here’s to sharing his wonderful story to others on the same path!!
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