‘Miracle baby’ defying spina bifida with fetal surgery that is growing in popularity across the U.S.

Pediatric neurosurgon Robert Bollo talks with Cami Humpherys about her 5-week-old son, Bennett, who had surgery for spina bifida while still in the womb, at Primary Children’s Hospital in Salt Lake City on Friday, Aug. 23, 2019. | Kristin Murphy

SALT LAKE CITY — When Joseph and Cami Humpherys went to find out the gender of their fifth child, the ultrasound technician lingered on the baby’s brain. The couple immediately knew something was wrong.

“I had this glimmer of hope that it was an inexperienced technician,” Cami Humpherys said, recalling the day her entire world fell apart.

“When the doctor came in, the first words he said were, ‘I’m sorry. Your baby has severe hydrocephaly and its bad,’” she said. “And then the shock and realization that this is real hit me.

“I was in total shock.”

If their baby boy survived spina bifida at birth, he would most likely have little to no quality of life, according to the doctor in Missouri, where the couple, who met in Utah, lived at the time. That same doctor all but encouraged them to consider terminating the pregnancy, which, for them, was never an option.

“I cried harder than I ever have,” Cami Humpherys said. “It was heartbreaking.”

Being a doctor, Joseph Humpherys had to believe something could be done. He had seen and heard his son’s heartbeat — and that made him want to fight.

“I saw that little baby move ... and, he’s my boy,” he said, fighting back tears.

While his emotionally broken wife spent the better part of two weeks in a dark place, he researched and studied and made calls. He posted photographs of their tiny baby, with the words “We’re going to have a miracle baby,” all over the house.

“It was the only way I could survive,” Joseph Humpherys said.

The doting father soon found out they had a three-week window to get qualified for and participate in a risky fetal surgery that could very well reverse the damage done by the brain herniation and accompanying lesion at the base of the tiny fetus’ spinal cord.

“If you can reverse the injury to his brain, how could you not do it?” Joseph Humpherys said. “The whole goal of fetal surgery is to stop the damage.”

The couple prayerfully went ahead with the surgery at the Children’s Hospital of Philadelphia, where fetal surgery for spina bifida, and specifically, myelomeningocele, was pioneered, as it is only offered in limited other places across the country. A team of 15 physicians participated in the operating room, each with a different but important and life-saving role.

The baby was brought to the surface of the uterus using an influx of synthetic amniotic fluid, and, after a couple of careful incisions, his back side was exposed, while the rest of him was retained in utero. His spinal cord was untethered and properly repositioned inside the spinal column, then the holes were sewn up.

“Outcomes are related to how fast they can get it done,” said Joseph Humpherys, who was finishing up his own surgical residency at the time, but was able to be at his wife’s side.

Cami Humpherys had to stay near the hospital for the duration of the pregnancy, as premature labor is an increased risk following fetal surgery, which, for this condition, can only be done between 23 and 26 weeks of gestation. Sure enough, however, her water broke at 29 weeks. After that, she was hospitalized and ordered on bed rest for as long as possible, or until 37 weeks, when they would safely evict the growing baby.

“I knew about fetal surgery,” Cami Humpherys said. “But nothing like this. Everything I’d heard of was laparoscopic, not where you open up the womb and perform surgery right there and close it up again.

“At that point, I’d do anything to save him.”

She spent 90 days in the hospital and, though she surrounded herself with positivity, she constantly obsessed about doing what was best for her unborn child.

Bennett Humpherys was born at 34 weeks and four days, weighing in at a whopping 6 pounds, 2 ounces, which the family and doctors counted as one of many blessings along their unexpected journey.

The little guy needed supplemental oxygen, bilirubin lights for two days and a feeding tube, but his chiari malformation, the herniation of his brain, had completely reversed a week after the surgery, and Cami Humpherys swears Bennett’s feet and toes were moving even before he was born, which she said “was nothing short of a miracle.”

“We were hoping for the best,” said the mother of five children, adding that the added worry while carrying him made it “the worst four months of our lives.”

“He was so worth it,” she said.

There weren’t proper resources to care for such a disability where they lived. And their doctor in Philadelphia recommended that they check out Primary Children’s Hospital for follow-up care.

Across the United States, about 1,645 babies are born with spina bifida each year, according to the Centers for Disease Control and Prevention. Research has yet to show what causes it, but taking folic acid supplements can help prevent it. It occurs early in pregnancy but is detected at or around 18 weeks of gestation, though, that wasn’t the case for the Humpherys.

They were told, even if it were detected earlier, there was nothing they could have done.

Spina bifida is rare, but it is the most common central nervous system birth defect in the U.S. The exposed nerves of the spinal cord can lead to a variety of complications, including limited mobility, potential developmental disorders and early death.

Surgery can also be done after birth, and has been for done for decades, but the results aren’t as impressive as with fetal surgery, research shows.

Bennett has the most severe type of spina bifida, yet surgery may have helped curtail most of the damage. The truth is, however, as the Humpherys were told at the first clinic appointment this month, there is no way of knowing how much damage has been done.

“They call them snowflakes. You never know,” Joseph Humpherys said. “They’re all unique and different. And they all face different challenges as they grow and develop.”

Going from being told their child would have little chance at life, to being born a healthy-looking baby, is encouraging — something the Humpherys never could have imagined. And it all came down to doing their own research, when one doctor told them they had little choice left.

“I know without a doubt, he would not have the function that he has without that surgery,” Cami Humpherys said, adding that her son is eating, pooping and urinating normally. She was happy to have the major problems taken care of before he was born, given that her son was destined to spend time in the neonatal intensive care unit anyway.

Fetal surgery for babies with spina bifida has been done, albeit on a very limited basis, with astounding results since the late 90s and early 2000s. Many physicians, like the one the Humpherys initially saw, still aren’t aware it can be done.

But, the number of hospitals with the resources to perform it is growing.

Primary Children’s Hospital, in Salt Lake City, is working with its partnering University of Utah hospital system to offer the complicated procedure in Salt Lake City in the near future, which is a good fit, as it already hosts one of the best pediatric spina bifida clinics in the country.

At just 6 weeks old, Bennett appears and acts the same as any one of the Humpherys other four children.

“I don’t think of him differently than my other babies,” Cami Humpherys said.

And, sometimes, even in the mere six weeks that he’s been here, the couple forgets that Bennett truly is different.

“The reality is that we know there are issues we have to deal with in the future,” Joseph Humpherys said. “But you have this baby who acts like a normal baby and nothing seems any different.”

“We’ve got our cute little miracle,” Cami Humpherys said.

The family, which relocated to Rapid City, South Dakota, after Bennett was born, will travel to the clinic at Primary Children’s every month for at least the first year of his life to monitor potential complications and make sure he’s on track to meet developmental milestones.

While the road was hard — harder than they could ever have imagined — and the bills have piled up to the tune of $300,000, the Humpherys want parents of other babies diagnosed with spina bifida to know there are options other than termination, including hope for a healthy baby.

“It was 100% worth it,” Cami Humpherys said. “And we’re so grateful. He was so worth it.”

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