Imagine hearing your unborn baby might not be able to walk. A Valley woman shares her story and the medical breakthrough that has changed her family's life.
“I'll never forget his introduction and he said 'Good afternoon, my name is Doctor Nyberg and I don't have very good news', “ Jodi Simmer said.
When Simmer was in her second trimester, an ultrasound revealed her unborn child had spina bifida. It’s a birth defect where the bones of the spine do not form properly around part of the baby's spinal cord.
“We were told she would never walk unassisted,” Simmer said. “We're told she most likely have a mental delay of something between a normal child and Down Syndrome child.”
While Simmer and her husband prepared for the unknown, Dr. David Nyberg with the Fetal and Women's Center of Arizona, he told them about a new clinical trial called MOMS. It looked at two different ways of treating spina bifida: Surgery after the baby is born or operating while the baby is still in the womb.
“We're hoping for in utero because we really felt that was going to be the best benefit for her,” Simmer said.
Simmer was one of 200 women in the study that received the prenatal surgery at the University of California San Francisco. It was one of three designated MOMS centers in the country.
“They have to open the mommy's tummy and they have to make a hole through the uterus,” Nyberg said. “They then get access to the baby's back and they bring the back as close as they can to the opening and they repair the defects.”
According to the study's findings published last month, prenatal surgery has many benefits.
“We started physical therapy as soon as we got home,” Simmer said. “And during this time she has been in tumbling classes and dancing classes and defied the odds.”
Other kids in the trial had similar outcomes, like Jodi’s daughter Jacy. They were able to walk and many didn't need a shunt to drain excess fluid and relieves pressure on the brain.
“In the prenatal surgical group, they were able to walk in 42 percent of cases. In the post natal surgical group it was 21 percent, Nyberg said. “The post natal surgery at the end of one year, 80 percent of them required shunting in the prenatal surgical group, 40 percent required shunting, so it reduced by half.”
While there will always be risks involved with prenatal surgery, Simmer is glad they did it.
“The benefits outweigh the risks because that has clearly been shown and they’re going to have surgery either way,” Nyberg said. “
"We love sharing her story and love telling people that it's not going to be a bad outcome," Simmer said.
Dr. David Nyberg is at the Fetal & Women's Center of Arizona. For more information go to www.fetalcenter.com.
