WICHITA, Kan. (KSNW) – McCoy Tittsworth prayed for a sister for years. His wishes came true in March 2017 when his little sister, Molly, was born at Wesley Medical Center.
Molly was born on a Tuesday morning. On Wednesday afternoon, her parents, Ryan and Janelle, were given permission to be discharged.
As they wrapped up things at the hospital, preparing to bring Molly home to McCoy, Molly’s blood sugar levels were a little bit off. Out of concern, the couple decided to stay another night. As Molly’s oxygen saturation levels began dropping, staff told the Tittsworths they needed to make some quick decisions and get Molly air-lifted to a city with a major children’s hospital.
“We dropped him off and gave him a hug and just told him that we’d be back when we could, not knowing if we’d bring his baby sister home at that point,” Janelle said about McCoy.
Molly has a complex congenital heart defect. She has a hole in her heart, an interrupted aortic arch and stenosis in her left ventricle.
“There’s a valve called a PDA that we’re all born with and the blood flows through that until 24 or 30 hours after you’re born and then that closes up and then the arch takes over that job. And because Molly’s arch wasn’t formed, when that valve started to close, then that was when they detected the issues. That’s when her oxygen was dropping,” Janelle explains.
At one week old, Molly underwent open-heart surgery at Children’s Mercy to place a stent. Her family brought her home and monitored her every move for eight months, taking videos of her daily to send to her heart team up in KC.
Molly’s second surgery was scheduled for November 2017. The family traveled up to Kansas City only to be turned away as Molly’s operation was postponed. The surgeon was sick.
“In the fall, it’s flu season, and we kept her healthy and strong. And we went to deliver her, it felt like we crossed the finish line and said, ‘We did our job. Here you go. Now fix her heart,” Janelle said.
Feeling defeated, the family returned home only to return a week later for the previously scheduled surgery.
“A surgeon said, ‘I know you were disappointed, but it was a very good thing that I did not do that surgery in that condition,” Ryan remembers.
The surgery took around 10 hours to complete.
“He said, ‘On a scale of one to 10. That was a 12,” Ryan said.
Surgeons combined Molly’s aorta and pulmonary artery to pull the blood from her left ventricle. They replaced her pulmonary artery with a conduit to pull blood from her right ventricle. They reconstructed and patched her aortic arch and then patched a large hole in her heart.
“He said it was one of the riskiest surgeries he had ever done,” Janelle said.
A slight blood sugar discrepancy kept the Tittsworths from going home that first night they could after Molly was born. Janelle recalls a conversation with Molly’s pediatric cardiologist.
“I said, we were supposed to be at home tonight. And she just kind of nodded and I said, ‘We would have lost her and she wouldn’t be with us tomorrow.’ And she just…kind of confirmed and I said, ‘Molly would have been another SIDS baby,” Janelle recalls.
Molly will undergo multiple surgeries in her lifetime. In the meantime, she is an active, smart, happy 4 year old. The family lives an otherwise normal life and focuses on getting Molly as big and strong as she can until it is time to return for another surgery.
Up until Molly’s heart complications, Janelle says she figured the term “heart health” primarily referred to strokes, heart attack and obesity. Molly’s journey made the family aware of the wide array of heart challenges.
Molly wears a bracelet that says, “heart warrior” made by another Wichita family with a heart defect. Janelle’s says “CHD aware.”
For this year’s Wichita Heart Walk, Molly’s team is a play on her favorite musician: Tom Petty. Their team name is Molly and the Heart Warriors.
Big brother McCoy is now 8 years old and curious to learn more about the heart inside the sister he long prayed for.
“Her heart is special,” McCoy said.