With the birth of baby Olive Weidenhammer Aug. 2, physicians at Walter Reed National Military Medical Center (WRNMMC) made military medical history. She was the first baby born in a military treatment facility after undergoing a delicate, life-changing surgery as a fetus in her mother’s womb nearly three months earlier in Philadelphia, on May 8.
A tale of two sisters
“We knew that something was wrong at 17 weeks,” said WRNMMC obstetrician Army Lt. Col. (Dr.) Scott Petersen, of Petty Officer 3rd Class Elizabeth Weidenhammer’s pregnancy. A serum screening test and an ultrasound confirmed it. Weidenhammer’s unborn baby had Spina Bifida like her older daughter, Willow. “The overall incidence is 3.5 per 10,000 live births in the U.S. Our patient’s rate was 2-3 percent now with two babies it’s 10 percent,” Petersen said.
The lesion was located at L3-L4 for the fetus, the same as older sister Willow. “They are a cookie cutter of each other,” Weidenhammer said. “Olive’s ultrasound looked exactly like Willow’s. It could definitely be the same child.”
After reviewing options with a multidisciplinary team of specialists at WRNMMC, Weidenhammer and her husband, Petty Officer 3rd Class Darren Weidenhammer, decided to seek a delicate operation for their unborn daughter that could offer their baby a very different outcome than older sister Willow, diagnosed with Spina Bifida three years earlier.
In 2008, Weidenhammer was stationed in Puget Sound, Wash., living alone when Willow was diagnosed with Spina Bifida in the womb. Darren was deployed to the Middle East.
“I was overwhelmed,” the Sailor said, when doctors told her about the future her unborn daughter could face with the diagnosis: bowel and bladder control issues; foot, leg and hip pain; difficulty walking; vision problems; mental and developmental delays; as well as hydrocephalus, a collection of fluid in the brain that requires a shunt to drain.
The young mother had to choose whether surgeons would close the opening in the L3-L4 region on Willow’s back after she was born, or participate in a medical trial at Children’s Hospital of Philadelphia (CHOP) and two other hospitals that offered a new, experimental surgery on her unborn fetus that could diminish the challenges that lay ahead. Weidenhammer chose not to participate in the trial, and a few months later, Willow was born by Caesarean section at University of Washington Medical Center in Seattle, Wash. She was transferred to the children’s clinic and surgeons went to work to repair the myelomeningocele immediately in a more than seven hour operation that required extensive plastic surgery to close Willow’s back. The next day, the infant had shunts placed in her head to relieve the hydrocephalus.
The first year of life was a challenge for Weidenhammer and her infant daughter, but Darren later joined them stateside. Willow endured seven different operations over the next several years and a series of casting that delayed her in walking. She took her first steps this spring at age 3. Willow uses a walker and wheelchair; she sees a physical therapist twice a week. Weidenhammer said her daughter sees specialists for gastroenterology, orthopedics, urology, neurosurgery and neurology complications from Spina Bifida.
As an embryo develops, the spine and spinal cord first begin flat. Over time as the fetus grows, the spinal column comes to close around the spinal cord, explained Petersen, who serves as chief of maternal-fetal medicine at WRNMMC. In Spina Bifida, closure around the cord doesn’t happen all the way, leaving an open gap in the spine.
"It's sort of like a zipper that starts in the middle, goes from top to bottom and closes. There's a problem with the way that it closes," said Army Col. (Dr.) Edward Coll, a developmental pediatrician and chief of the developmental pediatric service, who runs a specialty clinic for patients with Spina Bifida at WRNMMC.
The opening that exposes the spinal cord needs to be closed with surgery. The site of the spinal column and cord separation is often called a “lesion” after surgical repair.
Weidenhammer, now stationed in Maryland, became pregnant again earlier this year. Tests at WRNMMC indicated their second child also had Spina Bifida. Elizabeth recalled that the phone call with the diagnosis was definitely a surprise. “It was quite disappointing,” she said.
Surgeons at CHOP operated on Weidenhammer, to close the opening on the baby’s spine.
After six weeks of follow-up care and observation under the CHOP team, the Sailor returned to the care of neonatologists and the maternalfetal medicine team (high-risk obstetricians) at Walter Reed Bethesda, who maintained constant contact with her as she recovered in Philadelphia.
With fetal surgery in May at CHOP at 22 weeks and five days, Weidenhammer delivered daughter Olive at 34 weeks and five days. The C-section and recovery for mom and baby went well. Walter Reed Bethesda’s high-risk obstetricians, Petersen and Army Lt. Col. (Dr.) Kimberly Hickey, performed the milestone C-section delivery of baby Olive in August.
“This mother had unique care and unique expertise,” explained Dr. N. Scott Adzick, surgeon-in-chief at CHOP. “We worked in partnership with the military for the evaluation of the surgery, for the delivery and for post-natal care.”
Adzick explained how the procedure is performed at CHOP.
After a two-day evaluation to determine if both mom and fetus are suitable candidates for the surgery, the operation is performed between 19 and 26 weeks of pregnancy by a multidisciplinary team of surgeons and specialists. The mother is given deep general anesthesia and, during the surgery, the fetus gets an additional intramuscular shot of anesthesia. An incision is placed higher in the uterus than a normal C-section after doctors have determined the location of the baby in the uterus, with precise techniques to repair the baby’s myelomeningocele in layers. The uterine and abdominal wounds are then closed with absorbable sutures that will dissolve once the wounds are healed.
The mother runs the risk for several post-operative complications, including rupture of the membranes, uterine infection and scar tissue, as well as preterm labor. “The risk of premature birth, that’s the big one,” Adzick said.
He explained, prior to the completion of the 2010 randomized trial that studied prenatal versus postnatal Spina Bifida repair, mothers who received the fetal surgery stayed nearby the specialty hospital for the remainder of their pregnancy because their home hospitals weren’t able or didn’t have the resources available to support or monitor them.
“You have to have high-risk neonatology and OB teams. You really need to know what you’re doing and there’s no substitute for experience,” Adzick said. After the trial ended, the hospital began to consider whether to allow mothers to return to their home hospital. “It depends on the individual circumstances and experience of the referring clinical team,” he added.
The circumstances were right at Walter Reed Bethesda for Weidenhammer, who said she desperately wanted to return to the medical center and her family. After the six weeks of post-op observation had ended, the Sailor was firm on returning to WRNMMC.
“I couldn’t have had a better experience, especially with the two hospitals working together. I got to come [home] and just be with the people that I grew close with, and my husband and daughter, who are well worth it,” Weidenhammer explained.
“I think we’ve only had four moms, maybe five moms now who have delivered back at the referring hospital. Most moms stay and deliver with us,” explained Dr. Julie S. Moldenhauer, a maternal-fetal medicine reproductive geneticist who serves as the medical director of the Special Delivery Unit at CHOP.
Moldenhauer agreed the small number said a lot about Walter Reed Bethesda: the faith the fetal specialist had in Petersen and the services provided there. “Absolutely,” she said. “This was more than the typical C-section,” Moldenhauer said. “For her delivery, Dr. Petersen and his team had to be completely prepared and ready to handle any of the complications that could get thrown their way.”
The Amazing Results
The care they received at Walter Reed Bethesda, their “extremely supportive” respective commands, as well as the results of the 20-minute fetal surgery for baby Olive, and one-and-a-half hour surgery for Weidenhammer, was amazing, they said. Although doctors keep a close eye on Olive, Weidenhammer reports “we haven’t had any issues at all.”
Although Willow currently sees a civilian primary care manager, the couple plans to return her care back to WRNMMC.
“I know Bethesda. We’ve really found that we prefer having both of our girls there,” Weidenhammer said. “Just having more family-centered appointments and visits was great for us during the whole pregnancy and afterwards. Everyone did amazing after we had her in keeping the whole family together.”
The couple said the decision for fetal surgery was a good one and they encourage more military members to seek prenatal surgery for their children with Spina Bifida. With two daughters, mirror images of the other, born with the same congenital disorder in the same spot on the spine one with surgery in the womb and the other, surgery after birth the couple said there’s no doubt that they would make the same decision again. “The benefits are so obvious that we wouldn’t think twice about it.”