Leo was born at 33 weeks gestation along with his twin brother Derek at Children’s Hospital Colorado (CHCO) after a prenatal scan revealed that he had an abnormally small left ventricle, mitral valve and aorta. Leo had two heart surgeries in his first 6 weeks of life, one to repair his aorta and one to open up his mitral valve in hopes that he could make it long enough for a valve replacement when he was bigger.
Leo was helicoptered back to the hospital twice after being discharged home with respiratory distress. Upon the second re-admission, we received the news that Leo’s mitral valve was not growing at all. His right heart and lungs were becoming severely damaged and his only option was a heart transplant. Three days later, Leo had a cardiac arrest while in the Cardiac ICU. He was placed on Extracorporeal Membrane Oxygenation (ECMO) to take over for his heart and lungs. Two days after this, the surgeon was able to transfer him to a Ventricular Assist Device (VAD)to do the work for his left heart until he could get a transplant.
Leo spent several weeks the VAD and had a few complications including strokes and a chylothorax. The prognosis was looking worse and worse each day as doctors questioned whether Leo could ever get his breathing tube out, let alone be listed for a transplant. Doctors eventually figured out a solution to help his lungs and he rapidly improved. Three days after being listed, he received the gift of life on Mother’s Day.
However, his challenges were not over once he received his heart. His chylothorax returned, robbing his body of antibodies and protein with an alarming amount of fluid leaking from his chest and abdominal cavity. One of his transplant doctors suggested a treatment to stop the fluid leaking from his abdominal space. His idea worked and shortly after this, fluid stopped draining and his condition improved drastically. Doctors were amazed at what Leo overcame and many describe him as a miracle. Another doctor said he is not one, but “five miracles”. His family couldn’t agree more!
Today, Leo is a thriving 18-month-old who loves to laugh, crawls everywhere, and reads as many books as he can every day. He is catching up developmentally but continues to have some weakness in his right hand due to his stroke. He still has a feeding tube and practices eating daily (although if you ask him, he would rather be exploring the house than sitting in a high chair).
A heart transplant comes with a great deal of medical care. Leo will be on immunosuppressant medication for the rest of his life along with frequent trips to CHCO, which is two hours from his home. Leo and his family have partnered with COTA in preparation for a lifetime of ongoing transplant-related expenses.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.