Owen leaning against fence

#AmazingIs Stories, Mighty Blog

Owen’s heart thrives despite congenital diagnosis

owen6In the beginning of 2011, Paige and her husband were thrilled to learn they were pregnant with their first child. Since Paige has a mild heart defect, it was considered a high-risk pregnancy and she was under close supervision from her doctor. At her 20-week second-level ultrasound, her doctor found something unusual and referred her to the Children’s Heart Center for a cardiac ultrasound. There, Dr. Kelly Han from Children’s Minnesota diagnosed Paige’s baby with hypoplastic left heart syndrome (HLHS) – a heart defect that affects blood flow through the heart, causing the left side of the heart to not develop correctly during pregnancy.

The proposed treatment for their baby was a series of three surgeries during the following expected timeline: the first shortly after birth, second at 5 months, and last at 3.5 years. As if it’s not nerve-racking enough to anticipate your first baby, this added on to the anxiety. Paige and her husband, Jason, tried to learn everything they could about the condition. Before the birth, they met with the cardiologist and surgeon, and took a tour of the unit where their baby would be after he was born.

owenbaby2Owen was born in September at 39 weeks via a C-section because he was breech and turned around. After he was born, Owen was taken to the Neonatal Intensive Care Unit (NICU) and had his first surgery at 3 days old. Owen stayed in inpatient for seven weeks, and Paige and Jason finally brought him home right before Thanksgiving. They were home for four months and Owen was doing very well with regular check-ins for monitoring.

Then, at the end of February 2012, just around 6 months old, Owen became very sick. It was then that doctors decided that it was time for his second surgery. During this second surgery there were complications and he got chylothorax (chyle) leaks, which meant there was fluid in his chest. The chyle leaks damaged his lungs, so he needed a tracheostomy and a ventilator for seven months. Owen was in the hospital for five months following the surgery.

Owen’s third surgery took place when he turned 3 years old. Due to his body’s response to the change in circulation following the surgery, Owen was placed on ECMO. ECMO is a procedure used to take over the work of the lungs and the heart. Owen was on ECMO for 9 days, and when he was strong enough, the medical team performed a revised version of the third surgery. Owen’s heart did well after that, but following the surgery, he got the chyle leaks again. Owen remained in inpatient for five weeks until he was strong enough to go home.

owenswingPaige said they received excellent care at Children’s Minnesota. Even with their long stays, the Children’s staff was cognizant to keep Owen developing with occupational therapy, and his personal favorite, music therapy.

“For a while the music therapist, Erin Danielson, was the only person who could make him smile,” said Paige. “Owen still loves music and instruments.”

Owen turned 5 years old at the end of September 2016 and he is doing great! His heart will always be weaker, but there are no more planned surgeries. Owen is now in pre-school, he loves music and reading books, especially anything having to do with xylophones.

Several Children’s Minnesota doctors and specialists have cared for Owen throughout his life including Dr. Benhoor Soumekh, Dr. William Wheeler, Dr. David Overman, Dr. Gigi Chawla, Dr. Thomas Sutton and Dr. Marko Vezmar. Despite the large team, Owen’s care was always really well coordinated.

“The specialists always had the most up-to-date information during our meetings and made us feel like we were part of the care team,” said Paige. “Even during the long stays, Jason and I always knew the plan, even when it was the same as the day before.”