Jacy Simmer loves to dance, twirl and sing. She can run, jump and climb.
Smiling from near the top of a rock-climbing wall, the nearly 6-year-old shows off her skills.
But when her mom, Gilbert resident Jody Simmer, saw her first child for the first time in an ultrasound picture more than six years ago, the outlook was grim.
Jody and her husband, Jay, were told the baby – Jody was then 18 weeks along – had spina bifida, a condition that happens when the bones of the spinal cord do not join, creating an incomplete spinal canal.
The most severe form, myelomeningocele, is, “characterized by the extrusion of the spinal cord into a sac filled with cerebrospinal fluid,” according to the New England Journal of Medicine.
It happens in 3.4 cases of 10,000 live births, the same report says.
The Simmers were told their child would never walk unassisted and would need braces or be confined to a wheelchair. They were told she would have no bladder or bowel function and there would be a good chance she would have a mental delay.
Jody and Jay could have chosen to end the pregnancy. But the Simmers were given a glimmer of hope when they kept going with the pregnancy. That’s because Dr. David Nyberg, founder and director at the Fetal and Women’s Center where the Simmers were undergoing the ultrasound, knew of a study going on in California that involved prenatal surgery to cover the lesion on the baby’s back.
At that point, Nyberg said, the outcome was unknown. But the Simmers decided to give it a try.
A month later, in January 2005, Jody and Jay flew out to California. They met with doctors and study coordinators at the University of California, San Francisco.
Then, they threw their names into a computer that would decide whether they would be part of the group that underwent prenatal surgery or the group that underwent postnatal surgery.
Twenty seconds later they were chosen for prenatal surgery. That meant Jody had to be admitted to the hospital immediately. The family coordinated for Jody to spend the remainder of her pregnancy in California, with family and friends rotating in and out each week to support her.
Because of the Simmers, and the nearly 200 other women who participated in the Management of Myelomeningocele Study (MOMS), the outlook for future spina bifida children looks brighter, Nyberg said. And it’s meant a full life for Jacy. She faced a few medical issues after birth. Like many spina bifida children, she developed extra fluid on her brain (hydrocephalus) and at 9 months old a shunt was installed to drain the fluid. But today she looks and acts like a completely normal child, her mom said. She also has a little brother, who is 3, and Jody is expecting her third child this year.
“It’s been fun to share Jacy’s story. Instead of having to hear the doom and gloom, Jacy’s story is now giving people hope,” she said. “So far, everything the doctor predicted, Jacy has done the complete opposite. She walks and runs and jumps. She loves to dance. She’s in tumbling class. She’s incredibly smart. She’s very, very intelligent. There’s no delay at all.”
Birth defects affect 2 percent to 3 percent of all pregnancies no matter what factors the moms face, such as age, Nyberg said. He said when those defects are noticed during ultrasounds, he can direct families to doctors who can give them the best outcomes.
Now, one more “best outcome” is known because of the Simmers.
“The key in (Jody’s) case was the counseling part. I don’t think anybody in Arizona was sending patients to the MOMS trial at that point,” Nyberg said.
Besides UCSF, the study was conducted at the Children’s Hospital of Philadelphia and Vanderbilt University. It concluded in December.
“It still doesn’t mean all patients are going to have the prenatal surgery because it requires going out of state. It’s still a major commitment from the parents. Not everyone is going to have that, even though we know for a fact the outcome is better if they have the surgery,” Nyberg said.
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