Owen was born with a first class ticket to the NICU in January 2018. Our son was blue when he was delivered via c-section and spent 12 long days in the NICU. We had an array of problems to work through while he was there including oxygen levels, learning to breathe and eat at the same time, weight gain issues and a heart murmur that wouldn’t go away.
At our follow up cardiology appointment once he was discharged we were rushed to our nearby children’s hospital, Texas Children’s. We spent the week of Valentine’s Day seeing specialty after specialty and array of doctors with medical students. Our attending cardiologist mentioned our son could possibly have a rare genetic disorder called Williams Syndrome because of his congenital heart defect and everyone wanted to take a look at him. Williams Syndrome is 1 in 10,000 and is confirmed with genetic testing. Owen’s oxygen levels were still dropping randomly so we were sent home on home oxygen until further notice and were told to expect a phone call containing the results of his genetic test. 2 days later we got the call: our 3 week old newborn had tested positive for Williams Syndrome.
Google is the worst place to look up information on something like this but that’s exactly where I went. Luckily after joining several support groups online and finding an organization with tons of information I was able to truly see what my son could accomplish one day along with the hurdles he may have to overcome. I was still one scared momma, especially with the known fact that children with Williams Syndrome are at a higher risk of cardiac arrest anytime they are put under general anesthesia and the current medical journey Owen was on.
Owen’s medical journey after this didn’t get any easier. At 5 months old we finally had the answer to his oxygen level issues – Owen had another rare medical condition called Congenital Lobar Emphysema where his lung was trapping air causing it to inflate little by little. Owen’s organs had completely shifted to the opposite side of his chest. Owen underwent his first surgery to remove his upper left lobe at Texas Children’s and the surgeon was extremely successful. Owen is still monitored for this because it can come back and affect another lung area.
A few weeks later at a follow up cardiology appointment we found out that Owen’s heart had gotten incredibly worse. Surgery was the only way to fix it but no one at our children’s hospital could repair what truly needed to be worked on; the arteries inside his little lungs that were causing Owen’s heart to work so hard. After much research, tests and praying for our son to be saved we were admitted to the Pulmonary Reconstruction Program at Lucile Packard Children’s Hospital at Stanford in Palo Alto, California. Added bonus, one of the only Williams Syndrome cardiologists in the world also practices at this facility.
Owen was in the operating room for over 19 hours; he was only 11 months old. The surgeon was able to repair 33 peripheral pulmonary arteries inside his little lungs (the second most he had currently done), closed his ASD, and work on his aortic arch stenosis (the marker that had hinted to Williams Syndrome when he was a newborn). Owen came back to the CVICU with his chest open due to swelling and was almost unrecognizable to us. Owen had a cardiac arrest 24 hours after surgery and the team performed CPR right before our eyes. I will never forget the image of my son’s lifeless legs flailing up and down on that hospital bed.
Our son was placed on ECMO to give his little body a chance to rest. His reconstruction was a big change in his little body and it needed time to figure out how to work properly now. Owen was taken off of ECMO 5 days later on his 1st birthday! However, Owen’s recovery didn’t go uphill after that. After several weeks of not being able to move forward (and 2 heart caths) our son went in for another open heart surgery. Owen had work done on his coronaries as well as had some of his right ventricle muscle shaved off. Owen finally went uphill from there and after almost 2 months we were discharged!
Owen continued to have medical challenges after this but has always proven to be such a resilient, strong and brave little boy. Owen’s heart continues to be in the severe range and we have been blessed to dodge another open heart surgery last year but may change in the future. Because of Owen’s genetic disorder and the severity of his heart defects he will require yearly heart caths until further notice but we find comfort knowing he is in such great hands at these two hospitals. Owen is now 3 years old and one of the strongest human beings I have ever known – I am incredibly proud to call him my son ❤️