From heart to home

The Howerton family

EllaDean, age 7 with her family | Baby EllaDean recovering from open-heart surgery

Experts in our Heart Center comforted the Howertons through their daughter’s journey with hypoplastic right heart syndrome

Emily and Colby Howerton were thrilled to learn they’d be welcoming their first baby to their family in 2017. Twenty weeks into the pregnancy, the couple visited their doctor for a standard anatomy scan. The scan revealed devastating news: Their baby’s heart wasn’t developing typically.

“Our first reaction was, ‘What did we do wrong?’” Emily said. “The doctors assured us that we did nothing wrong — this is just something that happens. There’s a 1 in 100 chance, and you just don’t know why.”

Doctors diagnosed Emily and Colby’s unborn baby with hypoplastic right heart syndrome (HRHS), a rare condition in which parts of the right side of the heart do not develop fully and therefore cannot pump enough blood to the body. Babies born with HRHS require open-heart surgery shortly after birth, and additional surgeries throughout childhood.

Like any parents of a child with a highly complex condition like HRHS, Emily and Colby were scared. They met with Vincent Tam, M.D., medical director of Cardiothoracic Surgery, to develop a plan.

Before joining the Cook Children’s Heart Center, Dr. Tam trained at Johns Hopkins Hospital and Children’s Hospital of Philadelphia under William Norwood, M.D., the cardiothoracic surgeon who developed the Norwood procedure. This surgery is the first in the series of three total surgeries required to correct HRHS.

“Dr. Tam gave us all of the ins and outs of the procedure,” Colby said. “However hard it might have been, I really appreciated that he took the time to really lay it all out for us. It helped us feel more comfortable with what was happening. It was really cool to see his credentials — he’s a humble guy, but knowing that Dr. Tam learned the procedures from the person who actually created them helped us know that we were absolutely dealing with the best person to help our child.”

On March 28, 2017, Emily and Colby welcomed their daughter, EllaDean. Ten days later, EllaDean underwent the Norwood procedure at our Fort Worth medical center. She then spent four weeks in our cardiac intensive care unit (CICU), where another physician, Susan Davis, M.D., gave Emily and Colby the comfort they needed.

“The first time I saw her after that first surgery, the exact words I used were, ‘That’s not my baby.’” Emily said. “She was unrecognizable. Dr. Davis physically picked me up off the floor and said, ‘That is your baby. That’s her.’ She told us she would sit with our baby all night long, and that she would be there for her.”

“As a mom, I was still trying to recover from having the baby,” Emily said. “Dr. Davis told me I needed to go home and recover because I couldn’t care for EllaDean if I wasn’t at my best.”

Emily said the trust she and Colby had in the CICU team allowed them to go home and decompress when they needed to. They established a nighttime routine with their daughter, helped her fall asleep, went home and returned each morning for rounds with EllaDean’s physicians. Her recovery went according to plan, and at 4 weeks old, Emily and Colby took their daughter home with them for the first time.

At 6 months old, EllaDean underwent her second open-heart surgery and returned home 12 days post-operation. She completed a third and final surgery at 4 years old and went home just eight days later. Today, Emily and Colby describe their daughter as a sassy, spunky 7-year-old who loves drawing, dancing and tumbling.

Thankfully, EllaDean doesn’t visit our medical center often for sick visits. When she does come back, Emily said her team of caregivers remembers her and celebrates her success. She continues to see a Cook Children’s pediatrician, and Colby said he and Emily appreciate having a comprehensive, connected network of care so close to home.