Doctors were prepared to temporarily remove the fetus to do the procedure.
By Lisa Chmelecki
Staff writer

NORWAY – Doctors aren’t sure what happened.

When they performed an ultrasound on Melyca Waterman earlier this month, they expected to find her unborn baby’s lungs and abdomen filled with fluid.

That is usually what happens to babies with CHAOS, or Congenital High Airway Obstruction Syndrome.

The team of specialized surgeons in Philadelphia were prepared to perform a dangerous and rare procedure, removing the fetus from Waterman’s uterus, cutting a hole in its throat to drain the fluid, then putting the baby back and sewing up the incision.

Waterman and her husband, Scott, were prepared for the worst.

The Norway couple knew something could go wrong and they had accepted the fact that Melyca would have to stay in Philadelphia until the baby was ready to be delivered.

But with the unexpected ultrasound results, the Watermans were able to return to Maine this week. If all goes well, they’ll stay until the baby is ready to be born.

‘One less surgery’

Melyca Waterman’s mother, Karen Storman, said the couple is happy to be home. But they are still worried about what is to come.

“A lot of people who have heard that Melyca and Scott are home think that everything is OK. It’s not,” said Storman. “The CHAOS is still there. It’s just one less surgery that the baby has to go through.”

The Watermans learned in October that their baby had CHAOS, an extremely unusual disorder that has been diagnosed only 16 times.

Eleven of the children died before or immediately after birth. Two were aborted. Three are still living.

Babies with the disorder can’t breathe on their own because the airway from their nose to their bronchi is nearly blocked by a cyst, strange tissue growth of some other abnormality.

As a result, their lungs fill up with fluid normally expelled through the airway. As the lungs expand, they threaten to flatten the baby’s small diaphragm and crush its heart.

A pinhole

Soon after the Watermans got the diagnosis, they made plans to go to the Children’s Hospital of Philadelphia where the baby would undergo two operations, one while it was still in the uterus and another right before it was delivered.

The first surgery was canceled after doctors discovered no fluid in the baby’s abdomen.

Although they are not sure why the fluid build-up wasn’t as bad as expected, they offered the theory that the airway is blocked by a cyst, and the cyst has a pinhole in it.

Whatever the reason, the Watermans were thrilled.

“I don’t think either one of them really knew how depressing and sad it would be to be away from home,” Storman said. “Now they can just be a married couple for about a month.”

In January, right before the baby is ready to be born, the Watermans will return to Philadelphia where doctors will cut a hole in the baby’s throat before performing a Cesarean section.

Then, Melyca and the baby will likely have to stay in Philadelphia for up to a year while the baby will undergo several follow-up operations.

lchmelecki@sunjournal.com

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