Sweet Heart

Published: November 14th, 2012

Category: Home Page Features, Patient Stories, Recent News, Stories

David and Krista Kahn twin girls battled the odds of prematurity, and one also fought to survive a life-threatening heart defect.

By Karen Thurston Chavez

The Kahn Family, from left, Megan, Ryan, Ava, David and Krista.

Tallahassee couple David and Krista Kahn knew Krista’s pregnancy with twins was complicated, but they never imagined they would find themselves at Shands Hospital for Children at UF, or that one of their babies would have two open-heart surgeries before she was 5 months old.

But that’s exactly what happened when their twin girls, Ava and Megan, were born 12 weeks early on Aug. 18, 2011. Although the babies were three months shy of their due date, Anthony Gregg, M.D., a professor of obstetrics and gynecology and director of the maternal-fetal medicine division at the UF College of Medicine, recommended an immediate cesarean section. It was the babies’ best chance to survive.

“It reached a ‘Better out than in’ situation,” said David, a primary care physician in Tallahassee, whose daughters showed signs of twin-to-twin transfusion syndrome, a rare and potentially life-threatening condition in which blood moves from one baby to the other. One baby is left with too little blood, while the other has too much.

“Megan had five times the volume of amniotic fluid that she should have, while Ava was shrink-wrapped, with no volume,” David explained.

Megan came first, at 11:38 a.m. in distress, weighing 1 pound, 15 ounces. Ava followed one minute later, weighing 1 pound, 3 ounces. Ava was born with coarctation of the aorta, a narrowing of the large blood vessel that branches off the heart and delivers oxygen-rich blood to the body.

For most of the next five months, the Kahns, including their 3-year-old son Ryan, called Shands at UF their home while Ava and Megan overcame obstacles caused by their prematurity, and, in Ava’s case, life-threatening complications from her heart defect.

Dr. Jay Fricker (left) and Dr. Mark Bleiweis with Ava just prior to her release from the hospital.

But Ava couldn’t have arrived in the world at a better place than Gainesville, where the UF Congenital Heart Center is located. Its director and principal cardiothoracic surgeon Mark Bleiweis, M.D., is one of a handful of surgeons worldwide recognized for his expertise in repairing complex heart defects in very small babies.

Despite Megan’s early arrival, she slowly and steadily improved. With each passing week at the Shands at UF neonatal intensive care unit, she reached critical milestones — opening her eyes, breathing on her own, gaining weight and moving out of her incubator. On Nov. 3, 2011 — 78 days after she was born — Megan was discharged from the hospital. She weighed 4 pounds.

Ava’s journey home, however, would not begin for another two months. Her small size and tiny heart combined with the complexity of her heart defect made repairing it tricky and risky.

But it was a challenge that Bleiweis knew he had to take.

“She was pretty sick before the surgery. We took her in knowing her risk was extremely high, but we felt there was no alternative,” Bleiweis said.

“We knew if we did the surgery, there were risks and she might not make it,” Krista said. “But we knew if she didn’t have the surgery, she definitely would not make it.”

So, when Ava was just 2 months old, weighing no more than eight sticks of butter, she was taken into the operating room for her first open-heart surgery.

“The most difficult part of the day for us was watching her being wheeled down that long hallway without us by her side,” David said.

The surgical team had its challenges, too.

“Ava is one of the smallest babies we’ve operated on here,” Bleiweis said. “She was 2.6 pounds and her heart was the size of a small acorn. But our team’s expertise in repairing the hearts of even the smallest babies makes our center unique and remarkable.”

That’s good for Ava, because two months later, her heart needed to be repaired again. On Jan. 4, 2012, Ava — then 18 weeks old but weighing the size of a typical newborn at 7 pounds — went back to the O.R.

“When you fix the aorta in a really small baby like that, you rely on the aorta to grow. And whenever you put sutures in something, scars will form,” Bleiweis said. “It was a perfect repair at the time of surgery, but Ava grew, her aorta grew and narrowed where the sutures were. We went back and fixed it again, and it went very, very well.”

Ava’s recovery from her second heart repair was bumpy, but speedy. In just nine days, she was home with her parents, her sister, Megan, and brother, Ryan.

“It was so amazing to have our entire family home,” Krista wrote in the online journal she and David kept for family and friends. “Everyone slept soundly, as if to celebrate that everything was finally as it should be.”

Today, Ava has regular checkups at the UF Congenital Heart Center and the UF pediatric pulmonology clinic and continues to do well.In August, the twins celebrated their first birthday in bright, pink dresses eating vanilla iced cupcakes.

Despite Megan and Ava’s rocky start, the Kahn family has a typical life now. The girls are growing and thriving, and reaching expected milestones such as rolling over, sitting up, crawling, bouncing, and smiling and cooing at their parents. Megan is even walking.

The amount of energy that went into saving our babies was just incredible,” David said.

The Kahns served as the Ambassador Family at the Belt Buckle Ball, a fundraising event for the Children’s Miracle Network held Nov. 2 in Tallahassee. Jay Fricker, M.D., chief of pediatric cardiology at the UF College of Medicine, was keynote speaker at the event. This video tells the story of Megan’s and Ava’s first year of life. Click here or click on the photo of Ava.

Ava on her 1st birthday. Click the photo to watch the video about the twins’ first year of life.