Alex’s Story

Alex’s Story

From starting life to life support

Alex was born the youngest of five children. During his first few weeks as a newborn, he seemed as healthy as his siblings. But about seven weeks later, something seemed wrong. Alex started looking uncomfortable for long periods of time and Amelia’s motherly instinct kicked in. She feared it might be something bad.

Unfortunately, she was right.

Amelia rushed Alex to the nearest hospital just as he started turning blue. His oxygen level was at just 40 percent. At first, they thought he had pneumonia. But the doctors were wrong, and by the time Alex was properly diagnosed, he was on life support. The family was told he had pulmonary atresia – an abnormally developed heart where only two valves were working. So he went seven weeks without pulmonary arteries and no one knew about it.

"Alex is the only living child with what he has. There’s no other kid born like him." –Amelia

At this point, Alex’s parents wanted him to be in a hospital that provided the best specialty care for kids. They immediately moved him to Phoenix Children’s Hospital, where the doctors at the Children’s Heart Center, took over Alex’s care. Those same cardiology doctors were able to get blood to the lungs so Alex could breathe better, and shunts (connectors to allow blood flow between two locations) were used to keep his one artery open so it could continue to grow.

"Alex had his first surgery when he was only eight weeks old." –Amelia, Alex’s mom

It took a miracle to fix Alex’s heart

Alex spent his first year in Phoenix Children’s Newborn Intensive Care Unit (NICU). During this time, a miracle occurred. A small collateral vein grew out of Alex’s heart and connected to his liver. And to this day, this is how he gets his main blood supply. But throughout the years, Alex still had to endure multiple surgeries to keep enough blood properly circulating through his lungs and the rest of his body. Many times his family wasn’t sure if he’d pull through. Alex actually fell into a coma after one of the surgeries but came out of it unharmed.

Another time, he survived a 14-hour marathon surgery. The odds were never in his favor, but Alex’s dedicated team and his will to live helped him make a smooth recovery.

"I don’t want my son going anywhere else. I feel comfortable here. I’m able to leave with ease and know that my son is in good hands." –Amelia

As each year goes by, Alex gets stronger. Before his last surgery, about two years ago, the Children's Heart Center again contacted Alex. They explained that a heart pacer was going to be inserted and how it would work. After Alex understood what was going to happen, he turned to his mom and said, “I’m gonna get this surgery. I can do it, don’t worry about it.” The surgery was expected to take six hours, but after only three, the procedure was finished. Alex did exceptionally well. He didn’t even need pain medication. Alex went home two days later.

"He was never supposed to see one year’s old. He was never supposed to live past five. And now he’s going on ten." – Amelia

Caring for the whole family

During Alex’s many hospital stays, Wendy Pauker, part of the Child Life team, helped the family tremendously. She comforted his siblings and parents when doctors weren’t sure whether Alex would survive another heart surgery. She became Alex’s friend and has seen him grow up and overcome his challenges. She brings him toys, and she gave Alex one of his favorite gifts of all, a real helicopter ride. Wendy coordinated this adventure through the Hospital, and Alex’s love of airplanes and helicopters doubled from that day forward. She was also able to take him and his family to see a boat race at the Firebird Raceway.

"The staff is compassionate and you can tell they care." – Richard, Alex’s dad

Arva Bynum was Alex’s main nurse. Amelia said, “She always gave us hope. During tougher times, she would say ‘the numbers you see on Alex’s screen don’t mean he’s doing badly’.” Amelia always had a thousand questions, and Arva took the time to explain everything.

Alex lives for today

Alex is happiest when he’s playing outside. He enjoys softball and swimming, but football is his favorite sport.

"Despite all the treatments and hospitalizations, Alex seems to be a grounded, normal kid." –John Stock, MD, FACC, Pediatric Cardiologist

Even though Alex had extensive inpatient stays, he was still able to start school on time. But once his teachers realized that Alex had heart problems, he was instantly restricted from anything active. He couldn’t go out for recess and run around with the other kids because the school didn’t want to be responsible for his health. So as much as he wanted to run, jump and play, he ended up doing most of it at home.

Now, Alex lives for today. He’s one of the few children who truly understand that life is a gift. He’ll talk to you about his heart condition and, in typical boy fashion, he’ll even show you his scars. But when Alex goes to the park to play football, everything feels healed because what matters most to him is scoring the next touchdown.

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