Building a future for baby with rare defect

Boy born in Miami with heart outside chest

November 23, 2006|By Nancy McVicar | Nancy McVicar,South Florida Sun-Sentinel

FORT LAUDERDALE, Fla. -- The first inkling that something might be wrong with the baby boy she was carrying came in late September when Michelle Hasni was having a routine ultrasound at 32 weeks gestation.

"The technician asked me if there were any heart problems in my family," she said. Then came phone consultations between the technician and her doctor, and between her doctor and another doctor, while she worried about what the problem might be.

What the technician saw on the screen was the baby's heart protruding from his chest, an anomaly that occurs only about seven times in every 1 million births.

Hasni, 33, said she was given the name of the condition, ectopia cordis, and went home and researched it on the Web.

"There were pictures, some of babies where other organs were outside the body. I didn't find any where the baby survived," she said.

But she and husband Ghazi Habib Hasni, who live in Miami, got advice from several doctors and decided that having the baby at Jackson Memorial Hospital would give him the best chance at life.

"I'm sure everybody goes through denial, depression, but I have a strong faith in God and know he isn't going to give me anything I can't handle," she said. "Everybody I know is praying for him - my husband's family in North Africa, Tunisia, and my family is in Great Britain, and friends and family here, too."

Jackson assembled a team of doctors and nurses led by Dr. Salih Yasin to deliver the baby, Naseem, by C-section, and neonatologists to care for him in the first few hours of his life.

The C-section came at 36 weeks when the baby began having some distress, but he was 9 pounds, 2 ounces, big and strong considering his condition, said Dr. Eliot Rosenkranz, the surgeon who led the team that worked on the baby's heart and chest within hours of his birth.

The first priority was to provide protection for the heart, which was missing its pericardium, the natural sack that normally surrounds the organ.

"The principal goal for the newborn is to cover the heart with something, ideally some skin, and other layers of tissue," Rosenkranz said. "We used an artificial membrane from Gore-tex, bridged the gap between the two edges of the chest wall, and pushed the heart somewhat back into the chest."

Gore-tex, which is used in some outdoor clothing, also has several medical applications.

Since the surgery, the baby's heart has settled into a more natural placement in the chest, Rosenkranz said. When Naseem is about 6 months old, he will have more surgery to construct a breast bone, probably using short segments of ribs, two from either side of the chest.

Naseem has been doing well, and will be weaned off the machine that is helping him breathe in the next day or two, Rosenkranz said. Then he will need to be able to eat like a normal baby before he can go home, but that should occur within two weeks. He will need to wear a baby-sized chest protector.

Meanwhile, his mother visits him every day and takes photos on her cell phone to share with her other children, a boy, 13, and a girl, 8.

"I haven't been able to hold him yet," she says wistfully, "but I'm hoping to get him home before Christmas."

Nancy McVicar writes for the South Florida Sun-Sentinel.

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