Giving a kid a chance

Boyce family

Photo: Tom and Maggie Boyce and their 8-year-old son Brandon are with 11-month-old Tommy at their Oak Forest home last month. (Scott Stewart/Sun-Times)

OAK FOREST | Birth could have meant death for Tommy because his windpipe was blocked, but surgery done as he was delivered by C-section saved his life

July 8, 2007
Chicago Sun Times Article
BY JIM RITTER Health Reporter jritter@suntimes.com

Before he was born, Tommy Boyce was about as sick as a fetus can be and still be alive.

Tommy's lungs were dangerously enlarged and his heart was failing because of a rare congenital condition called CHAOS.

Doctors gave his Oak Forest parents two choices: Terminate the pregnancy or watch Tommy die within minutes of his birth.

Tom and Maggie Boyce couldn't accept either choice. And after many hours on the Internet, Maggie learned of a fetal surgery in Cincinnati that might save Tommy's life.

It would be risky. There was a chance Maggie could hemorrhage and require a hysterectomy. Tommy could have severe birth defects such as blindness or mental retardation. And he might have to spend years -- maybe even a lifetime -- on a feeding tube and ventilator.

Still, Tom and Maggie decided to go ahead with the delicate surgery to compensate for a blockage in Tommy's windpipe. Without the surgery, Tommy would suffocate as soon as he emerged from the womb.

"How do you not give a kid a chance?" Maggie said.

'Exit procedure'

There are only about 10 fetal surgeons in the United States, and 20 worldwide. The Fetal Care Center of Cincinnati, a collaboration of three hospitals, is one of three U.S. centers that offer a full range of fetal surgeries. The other two are in San Francisco and Philadelphia.

Fetal surgeries correct heart defects, remove benign tumors, clear airway blockages, etc. Doctors typically operate on the fetus between the 19th and 30th weeks, and the pregnancy continues.

In Tommy's case, though, doctors performed an "exit procedure" while Tommy was being delivered by Caesarean section.

Tommy was half inside the womb -- and still receiving oxygen-rich blood from his mother -- when doctors cut a hole in his throat and installed a breathing tube. Then they cut and clamped the umbilical cord and finished delivering Tommy.

The operation was successful. But there would be many rough days ahead.

Tommy was one of the fewer than 50 documented cases of CHAOS -- congenital high airway obstruction syndrome.

Given the odds, some parents of CHAOS babies opt for abortions.

But not the Boyces.

"We could not terminate a baby," Maggie said. "It was not an option."

The exit procedure was planned for the 36th week of Maggie's pregnancy. But when she went into labor at week 33, the fetal care center dispatched a jet to bring her back.

Separate surgical teams were waiting for Maggie and Tommy -- a total of about 35 doctors, nurses and technicians, said fetal surgeon Dr. Timothy Crombleholme.

Went home in March

After Tommy was born Aug. 1, 2006, he spent more than four months in Cincinnati Children's Hospital. Day after day, Maggie stayed at his side from 7 a.m. to 11 p.m. Tom, a computer support manager, went back to Oak Forest so he could work and care for their other son, Brandon.

Every weekend, Tom and Brandon drove 285 miles each way to Cincinnati to visit Tommy and give Maggie a break.

Tommy was transferred to Chicago's Children's Memorial Hospital in December and finally went home in March.

It turns out Tommy did have several birth defects besides the windpipe obstruction. But they were relatively minor: He has a small hole in his heart that hopefully won't cause problems, and an extra, non-functioning finger that was removed.

As Tommy approaches his first birthday, he appears to be pretty much on track developmentally. And considering all he's been through, he's a remarkably happy baby who cries little and smiles frequently.

But he still has to be fed by tube, remains on a ventilator and requires around-the-clock care.

If the breathing tube were to fall out and not be replaced immediately, Tommy would suffocate. He also needs frequent suctioning. The ventilator has to be monitored, filters changed, feeding tubes replaced.

'I'm not going to complain'

Maggie has quit her substitute teaching job to care for Tommy. Tommy also has in-home nursing care up to 18 hours a day. A battery-operated portable ventilator enables him to go on family outings.

Tom said he stopped keeping track of the medical bills after they topped $750,000. Insurance paid the hospital bills, and the state pays for in-home nursing care.

In addition to not being able to eat or breathe on his own, Tommy can't speak. But he communicates with his eyes and is learning sign language. He can sign "Mommy" and signal when he wants to be suctioned.

The Boyces hope that someday, Tommy can have reconstruction surgery that would enable him to talk, eat and breathe normally. But there are no guarantees.

It has been exhausting at times, Maggie said. But "I'm not going to complain about taking care of my baby. I'm going to savor the moment, and enjoy what time I have with him."

It has also been stressful, Tom said. But he added that Tommy has brought an already tight-knit family even closer together.

"I wouldn't have it any other way."