Naseem has defied the long odds of life
The first inkling that something might be wrong with her pregnancy 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 fetus’ heart protruding from its chest, an anomaly that occurs only about seven times in every million births.
Hasni, 33, said she was given the name of the condition, ectopia cordis, and went home and researched it on the Web. That’s when she knew how serious it was.
“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 their son 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” -- her husband’s family in Tunisia, her family in Great Britain, and friends and family.
The hospital 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 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 Oct. 31.
“I’ve seen one or two babies with this before, [including] one that died within hours of being born, and not long ago a child with abnormalities in the chest,” Rosenkranz said. “It is very infrequent.”
The first priority was to provide protection for the heart, which was missing its pericardium, the sac that normally surrounds the heart.
“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 is used in 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, he will have more surgery to construct a breastbone, probably using short segments of ribs, two from either side of the chest.
“The [normal] breast bone is a continuous solid bone, and it’s not going to be quite like that,” Rosenkranz said, “but what happens is the bone does heal.”
Naseem has been doing well and within days will be weaned from the machine that is helping him breathe, Rosenkranz said.
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 also will need to wear a chest protector.
His condition is listed as critical but stable in the Pediatric Intensive Care Unit at Holtz Children’s Hospital, where his mother visits him every day and takes photos with her cellphone to share with her other two children, a son, 13, and daughter, 8.
“I haven’t been able to hold him yet,” she says wistfully, “but I’m hoping to get him home before Christmas.”
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