A Norway couple has faith that their unborn baby will be the fourth in the world to survive a rare disorder.
NORWAY – As the doctor explained the rare, risky procedure, Scott Waterman looked at his wife, looked at her pregnant belly and wondered: Is it worth taking the chance?
Then he met her.
The 2-year-old girl walked into the Philadelphia hospital with her mother. She was dressed in a pink fairy costume for Halloween, and she was pushing her favorite doll in a baby stroller.
She couldn’t talk, and her mother still had to feed her through a tube. But she looked happy, healthy. Her smile was beautiful.
As soon as she spun around to show off her fairy wings, Waterman knew that he and his wife, Melyca, were making the right choice by not aborting their baby.
Melyca Waterman is six months pregnant. The Norway couple found out last month that their unborn baby had a rare disorder called CHAOS, or Congenital High Airway Obstruction Syndrome.
It means that the airway from the baby’s nose to the bronchi is almost completely blocked by a cyst, strange tissue growth or some other abnormality.
As a result, the baby’s lungs are filling up with fluid that is normally expelled through the airway. As the lungs expand, they threaten to flatten the baby’s small diaphragm and crush its heart.
Only 16 babies in the world have been diagnosed with the disorder. Eleven of them died before or immediately after birth. Two were aborted.
And three are still living, including a 5-year-old boy in Japan and the 2-year-old girl who the Watermans met in Philadelphia.
“After meeting her, I knew,” said Scott Waterman, as he stared at his wife’s belly and nodded his head. “It’s going to be a long couple of years, but it’s not all doom and gloom.”
Scott and Melyca Waterman met at their church after Scott moved to Maine from Washington. They were friends before they fell in love.
The pregnancy came unexpectedly. Although they were nervous about sharing the news with their families, they told each other that they couldn’t be happier. They spent their nights planning their wedding and picking out baby names.
Melyca Waterman was so convinced she was having a boy that she bought a few baby-boy outfits.
An Oct. 17 ultrasound showed a girl. The test also revealed that the baby’s lungs were discolored and her umbilical cord had two vessels instead of three.
The couple’s doctor suggested they travel immediately to the Children’s Hospital of Philadelphia to meet with doctors who specialize in CHAOS.
Days later, the Watermans were sitting at a conference table as two doctors explained the dangers of the two operations the unborn baby would need to survive.
Melyca was told that she would have to return to Philadelphia on Dec. 1 and stay for several months after the baby was born. The doctors told the couple they had a week to decide if they wanted to have an abortion.
Melyca didn’t have to think about it, even after learning that her own life could be in danger.
“No matter what happens, this baby deserves the best chance at living,” she said.
The first operation will be performed shortly after the couple arrives in Philadelphia, while the baby is still in the uterus. Doctors will make an incision in Melyca’s abdomen, as if they were doing a Cesarean section.
They will remove the blockage in the baby’s airway and perform a tracheotomy, cutting an opening in her throat to release fluid from her lungs. Then doctors will secure the fetus in the uterus and sew up the incision.
Two to three months later, when the baby is ready to be born, doctors will make another incision and pull out her head, neck and left arm. Then they will have 45 to 60 minutes to clear her airway and complete the delivery.
“I didn’t even know they could do anything like this,” Scott Waterman said.
Melyca and the baby might have to stay at the Philadelphia hospital for up to a year, and the baby will likely require several follow-up operations. Doctors eventually may be able to close the opening in her throat or she may need it forever.
The 2-year-old in the fairy costume still needed the opening in her throat to breathe. When the Watermans met her, she was being admitted to the hospital for another surgery.
Still, she was smiling.
And the Watermans knew their baby – whose middle name will be Faith – would be just as lucky.
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