A miracle of modern medicine

A few days into this world, Christopher Jude Leslie Center amazed his family and the staff at Children's Hospital of Philadelphia when he rolled from his belly onto his side.

"The nurses said, 'Even our normal babies don't usually do that,'" said his mom, Michelle L. Boulton Center, a 1996 graduate of General Brown Central School.

But by all appearances, except for a scar a few inches long on his back, Christopher, with deep blue eyes and light brown hair, is a normal baby. But his trip into this world was anything but normal. It was a roller-coaster ride that began with despair and ended, his family says, with a miracle.

Michelle is married to Army Capt. Christopher L. Center, who began an assignment at Fort Irwin in California last April. Over the summer, she put in her four-week notice to St. Joseph's Hospital in Syracuse, where she worked as a surgical physician assistant, informing the hospital she planned to move to California to be with her husband and to start their family with their first baby, expected to be born in early 2008.

Capt. Center returned to Syracuse on Sept. 6 for his wife's second ultrasound. "We went to the doctor's not thinking anything was wrong. He hadn't seen the baby on ultrasound yet," Mrs. Center said.

But she said the ultrasound seemed to take forever as the fetus was studied. The couple was finally told the baby she was carrying apparently had spina bifida.

Spina bifida, characterized by imperfect closure of the spinal column, is the most frequently occurring permanently disabling birth defect, affecting approximately one out of every 1,000 newborns in the United States, according to the Spina Bifida Association.

The Centers' baby had myelomeningocele — the most severe form of spina bifida — in which the spinal cord has not completely developed and is open on the back of the baby because the overlying bones, muscle and skin are also open. Consequences range from minor physical problems to severe physical and mental disabilities.

According to the National Institute of Child Health and Human Development, the point along the spinal cord where the undeveloped area occurs is called the "level" of the spina bifida. The higher up the spinal column the level occurs, the greater the effect on normal nerve function.

The Centers' baby had the undeveloped area at around the fourth lumbar vertebrae. The lumbar area, containing five bones, is where the low back begins, directly above the sacrum area.

"When I think of spina bifida, I think of paralysis and wheelchairs," Mrs. Center said. "I don't think of a thriving baby."

The Centers were sent to follow-up appointments at Strong Memorial Hospital in Rochester. "Visits with the doctors were doom and gloom," Mrs. Center said. "They said, 'I'm sorry.' They didn't give you any hope."

She said she was told it would be acceptable to abort their baby, something the couple said they would never consider.

"We were willing to do whatever we had to do," Mrs. Center said.

Luck intervened when they met a genetic counselor at Strong Memorial. The counselor gave the couple a packet of information about a clinical trial being conducted by the National Institute of Child Health and Human Development. But they were told it would likely be very difficult to get accepted for the study.

The most common treatment for spina bifida is to close and repair the opening after birth. The surgery puts the tissues back in their normal position and prevents further damage to and infection of the nervous tissue, but does not restore function to the already damaged nerves.

The NICHHD notes that for the past several years, three medical centers in the United States have been operating on babies with spina bifida to close the open defects in the spines while they are still in their mothers' wombs. Preliminary results have been encouraging, but it is not known if surgery before or after birth is best.

The purpose of the Management of Myelomeningocele Study (MOMS), which began in 2003, is to compare surgeries before and after birth. A NICHHD spokesman said in late January that study was seeking 200 women and that 138 had been selected thus far.

Mrs. Center said the belief is that damage from spina bifida occurs when the open spinal column is exposed to amniotic fluid in the womb. "Over time, that's what causes damage and paralysis," she said. "The thought is the sooner you close it, the less damage."

She began filling out paperwork for the study and had her medical records evaluated by MOMS staff.

"You want more than anything to be part of the study, but you know there's so many things that can disqualify you," Mrs. Center said.

In the back of her mind was the knowledge that even if she was picked for the study, she had a 50 percent chance of having the surgery done on her baby after his birth.

After reviewing her initial data, MOMS officials informed her she was eligible to advance to the next part of the clinical trial that would take place at The Children's Hospital of Philadelphia. There are two other participating MOMS centers: the University of California at San Francisco and Vanderbilt University Medical Center in Nashville.

Mrs. Center left for Philadelphia on Oct. 1. The study required her to have a support person, but her husband had to return to California, where he was serving as an observer controller at the National Training Center at Fort Irwin. Capt. Center said the job involves training scout platoons for Iraq and Afghanistan. He put in a request for compassionate reassignment to be closer to his wife.

He was often able to fly back to Philadelphia to spend the key moments of his wife's ordeal with her.

Capt. Center, who served in Iraq from August 2005 to August 2006, said, "Nothing I've experienced in the military can prepare you for when you're told your child will never walk or have normal neurological functions."

Mrs. Center's mother, Judy E. Boulton of Watertown, agreed to be her support person. Mrs. Boulton works as an advertising representative at the Watertown Daily Times and was allowed to take temporary leave. The study paid for travel and meals. They stayed at the Ronald McDonald House in Philadelphia.

"She was an awesome support person," Mrs. Center said. "You always want your mother in a situation like that, and she was there for me."

Mother and daughter were told to pack for four months. "You go to Philadelphia not knowing if you're picked for the study or not," Mrs. Center said. "We packed and made that commitment, not knowing if we'd be sent home the following week, which happens in most cases."

The final screening included a sonogram, a magnetic resonance imaging scan of the fetus's head, a social work evaluation and a review of medications. On Oct. 5, Mrs. Center was told she was accepted for the study.

Just being accepted, even without knowing if the surgery would be prenatal or postnatal, lifted her spirits.

"We were absolutely thrilled," she said. "We were at a hospital with some of the best doctors in the country. We were willing to accept anything. We put it in God's hands."

But one of the most agonizing parts of the clinical trial was the two-day wait after learning she'd been accepted. MOMS is a randomized study. A computer at the Biostatistics Center of the George Washington University in Rockville, Md., decides if participants' babies will have surgery in the womb or after birth. On Oct. 8, Mrs. Center's name was sent to the university, with an answer expected in 30 minutes.

"What a long half-hour that was," Mrs. Center said.

The answer came, and she was told surgery on her 23-week old fetus would be the following day.

"I immediately started crying," Mrs. Center said. "I felt we had an answer to our prayers."

The surgery at Children's Hospital was not without complications. Mrs. Center's blood pressure dropped drastically, as did the baby's heart rate.

"We almost lost my daughter and her baby," Mrs. Boulton said.

However, both conditions stabilized. One fortunate thing was the fetus's position, which made the operation easier. Usually in the surgeries, the uterus is taken out and placed on the mother. But Christopher's back was facing up, as if giving an open invitation to doctors for easy access to his problem area. The uterus didn't have to be removed.

"He was ready to go," his mother said.

The amniotic fluid was drained, the surgery to repair Christopher's spine took place and the amniotic fluid was replaced.

But another problem arose after surgery when Mrs. Center went into preterm labor. She was given high doses of magnesium sulfate to stop the labor, but it left her paralyzed for several hours. Her husband spent the night at her bedside, swabbing her mouth with a moist towel.

"She's a very strong person," Capt. Center said. "It doesn't surprise me how she handled the situation. She's a very courageous woman. That's why I married her."

Mrs. Center was released five days after surgery and was assigned 14 weeks of rest. She had to stay in bed at Philadelphia's Ronald McDonald House for the first five weeks but was allowed a wheelchair after that. She left the building once a week for an ultrasound. Her mother brought her meals.

"She basically had a full-time job when she was down there," Mrs. Center said.

Mrs. Center said Christopher had to overcome another problem as he developed. "I had a lot of thin, weak areas in my uterus," she said. "It was worn so thin because of the surgery."

"Her doctor said it was a miracle she made it to 37 weeks because her uterus began to tear," Mrs. Boulton said.

Christopher was delivered Jan. 11 by Caesarean section, weighing 6 pounds, 10 ounces. He was 191/2 inches long. His mom got to see him just briefly after he was born, as she was still groggy from her anesthetic.

Mrs. Center got to hold him a few hours later. "I can't even explain it," she said. "It was very emotional. Everybody who saw him was overcome by emotion, considering all the things we went through."

The emotions were boosted by initial indications that Christopher showed few, if any, signs of spina bifida.

Mrs. Center was allowed to take Christopher home Jan. 20. But when the happy day came, Mrs. Center came down with a bad stomach bug that left her in bed.

"That was kind of heartbreaking," Mrs. Center said. "The roller coaster went back up. We did another loop."

Her mom and her husband went to the hospital to pick up Christopher. He was brought home to the family's new apartment in Brewerton. Capt. Center's request for compassionate reassignment was granted. He works as an operations officer for the Syracuse University Army ROTC battalion.

Mrs. Center said her bosses at St. Joseph's have also been accommodating. She was told she can have her old job back when she's ready.

But that's at the back of her mind. Her first concern is Christopher.

"To look at him and to see his development and progress, you never know he had spina bifida," she said. "He's a very strong little baby."

Christopher has many follow-up appointments scheduled with Syracuse-area doctors. Each visit gives his parents and other relatives a chance to exhale. His grandmother said that so far there have been no obvious signs of spina bifida.

He's scheduled to have long-term follow-ups at Children's Hospital of Philadelphia to check motor function, developmental progress and bladder, kidney and brain development. Assessments by NICHHD will be done by a team of specialists who will not know whether the child had prenatal or postnatal surgery. On Wednesday, doctors there examined Christopher and found him to be developing normally.

Mrs. Center said her husband jokes that the surgery gave the baby "superhuman power."

"There's really no difference between him and a normal baby," he said.

The Centers and their families are keeping their fingers crossed as they look to the days ahead. But they are grateful to have gotten where they are with Christopher.

"It was quite a journey," Mrs. Center said. "But I would do it again for him."