Baby, Diagnosed in Utero, Beats Odds, Won’t Stop Smiling
Tuesday, May 27, 2008
Only 1 in 3,000 newborns are born with CDH -- the defect Mason had. CDH has a forbidding survival rate of only 50 percent.
In December 2006, Webster residents Despina and Scott Mitchell set off to a prenatal appointment, excited to learn if they were having a boy or a girl.
But the mid-point ultrasound showed something they didn’t expect — a black mass on the screen hinted that their baby son would be born with a congenital diaphragmatic hernia, or CDH. Only 1 in 3,000 newborns are born with this defect, which has a forbidding survival rate of only 50 percent.
Thomas McNanley, M.D., an associate professor of Obstetrics and Gynecology at the University of Rochester Medical Center, who specializes in obstetric testing at the University’s affiliate, Highland Hospital, explained to the couple that their son, Mason, would be born with a hole is his diaphragm — the sheet of muscle just below the lungs. To live, Mason would need surgery soon after being born.
“That hole had allowed Mason’s organs to drift up into his chest, squeezing on his lungs and keeping them from growing,” Despina Mitchell said.
After testing to make sure nothing else was awry, McNanley sent the Mitchells to meet Timothy Stevens, M.D., M.P.H., a neonatologist who directs the Neonatal Intensive Care Unit at Golisano Children’s Hospital at Strong.
“Dr. Stevens toured us through the NICU, comforting us, but not sugar coating anything,” Mitchell said.
The couple braced themselves for the very real chance that, even with every medical intervention available, Mason might not survive.
“We waited to paint the nursery,” Mitchell said.
Three days after he was born, Mason was put on ECMO, a heart-lung machine that helped deliver the oxygen his body needed. Nine days later, he underwent surgery to place his liver, stomach, spleen and intestines back where they belonged. It seemed to be a success, and two days later, he was taken off ECMO.
But for two weeks, Mason still struggled to wean off intensive breathing support. It wasn’t until June 2 — the day of the hospital’s annual Children’s Miracle Network telethon—that he achieved freedom.
“They announced during the broadcast, that ‘Mason Mitchell is finally, for the first time in his life, breathing on his own,’” Mitchell said.
Mason continued to improve. He practiced feeding, phased off pain relievers and on July 3, he headed home from his 56-day stay.
But a few months later, Mason began vomiting and Mitchell’s mommy-radar sensed something was wrong.
The couple brought Mason back in, learning that his scar tissue had caused a bowel obstruction — a slight risk from the initial surgery. Mason underwent his second operation, spending another two weeks in the hospital, struggling to regain weight he’d lost.
In December, after he’d been home again for little more than a month, Mason coughed in a way that again piqued Despina’s concern.
She was right. An X-ray showed that something extremely rare had happened: Mason’s diaphragm patch, along with the patch in his abdomen that held his organs in place, had both dissolved, causing him to re-herniate. Now an expert in hospitalization and healing, Mason would spend just five days recovering after a double-duty surgery to mend both tears.
A little more than a week before Christmas, Mason headed home, whole. Thankfully, he has been healthy since.
“Holding him in our arms was the best gift imaginable,” Mitchell said.
The Mitchells, eager to make the NICU a more welcoming place for other parents, have raised $8,300 toward renovating the unit’s parent waiting room.
Despina has also plugged into an online support group for parents of children with CDH, called Breath of Hope, Inc. Her dream is to develop a network of her own, providing access to experts, information on the best therapies and the latest research.
25th annual Children’s Miracle Network Telethon on 10NBC
Mason, along with five other Miracle Kids and their families, will be honored during Golisano Children’s Hospital’s 25th annual Children’s Miracle Network Telethon on 10NBC. Set for Sunday, June 1, this year’s telethon will broadcast live from the Strong Memorial Hospital Lobby, 10 a.m. to 1 p.m. and 7 to 11 p.m. Viewers can expect stories of bravery, medical miracles and the power of family, and can help the hospital by phoning in gifts to (585) 241-KIDS (number is only operational during the event).