Mending a Tiny Heart
Deborah Mays found herself at a crossroads near the end of her pregnancy. She could stay at the hospital she knew so well with the obstetrician who delivered her other children or follow the pediatrician’s advice and consider Children’s Health.
“As parents, Erik and I knew the greatest gift we could give Teddy, aside from all our love, was the best possible medical care,” Deborah said. “Given the precarious circumstances of his arrival, we knew it could possibly be the only gift we would ever give him.”
Deborah found out at her routine 20-week appointment that Teddy would be born with complex heart conditions requiring specialized care.
“What was meant to be a 30-minute appointment became four hours that left me feeling as though the weight of the world was on my shoulders and praying that I would make it to my car without crying uncontrollably,” Deborah said. “I will never be able to accurately portray the magnitude, depth and breadth of the despair and heartache that consumed me. It was a despair I had never known and pray I will never know again.”
Searching for the Best
Deborah and Erik began the search to find the best doctors and hospital for Teddy.
The couple did not take the decision lightly. They researched hospitals across the country and would go to the ends of the earth if it meant their baby boy would live. The moment Deborah will never forget was when she asked a doctor in Boston if he could perform the surgery Teddy needed better than Dr. Joseph Forbess, division director of Cardiothoracic Surgery and co-director of The Heart Center at Children’s Health.
“He said ‘no’ and that Dr. Forbess has an incredible reputation as a pediatric cardiothoracic surgeon with outcomes right up there with the best of the best. That was a huge moment for us.”
Last Minute Change in Plans
During the first appointment at Children’s, Deborah and Erik were given answers to questions they did not even know to ask. After meeting Dr. Forbess, they knew Children’s Health was the place for Teddy.
“Faith is a big part of our lives, and after doing extensive research and seeing multiple doctors, we approached the decision prayerfully,” Deborah said. “We liked that Children’s was an academic hospital and every specialty that Teddy could possibly need was there. We also really connected with our doctors.”
With the due date approaching, Deborah made phone calls to her cardiologist and obstetrician to let them know the change in plans.
Dr. Catherine Ikemba, a pediatric cardiologist and director of the Fetal Heart Program at Children’s Health, performed fetal echocardiograms when Teddy was 30 weeks and 36 weeks gestation.
“I am very honest with my patients,” Dr. Ikemba said. “There is a lot we cannot predict in life, so I try to prepare families for best and worst case scenarios. Caring for a child with complex single ventricle congenital heart disease is quite an endeavor that affects the entire family.”
Deborah appreciated Dr. Ikemba’s honesty even when it was not what she wanted to hear.
“Dr. Ikemba was my rock and didn’t sugarcoat anything,” Deborah said. “The night before Teddy’s surgery, she came to visit me after what I am sure was a very long day for her. Over the course of this heartbreaking journey, we found real beauty in so many people.”
Home Sweet Home
At 39 weeks gestation, Teddy was born with dextrocardia and complex single ventricle with pulmonary atresia. He underwent his first procedure in the Children’s Health Pogue Catheterization Lab at a couple of days old. After another procedure in the catheterization lab at 2 ½ months old and open heart surgery at 4 months old, Teddy is home and visits Children’s Health every three months for checkups.
The thriving 14-month-old spends the majority of his time keeping Deborah on her toes. Teddy’s four older siblings adore him.
“Teddy rules the roost,” Deborah said. “Nobody messes with Teddy. If he isn’t happy, no one is.”
With the toddler’s constant hugs and endless laughter, the Mays family is happy – and complete.