After a challenging pregnancy, Kristy has some wisdom she hopes to share with mothers in similar situations.
Kristy says she and her husband, Keith, first found out about their daughter Adelaide’s spina bifida diagnosis at their 20-week ultrasound. Myelomeningocele (MMC), one of the most severe forms of spina bifida, is a condition where the fetus’ spinal cord fails to close during development. Some of its major complications include hydrocephalus, Chiari malformation and lack of movement in the lower extremities.
“We weren’t nervous going into it because we had already had an ultrasound at 16 weeks and everything seemed fine at the time,” Kristy explains.
Her OB-GYN told her that, this time, he’d identified abnormalities in Adelaide’s development, including a spot on her spine, a misshapen cranium and dilated ventricles in her brain. He wanted Kristy to see a specialist.
“I left that appointment and exited through the busy waiting room, my eyes blinded in tears,” Kristy says, adding that it was stressful few days before she could get in touch with a specialist.
When she did, however, the specialist was able to identify spina bifida and encouraged Kristy and Keith to look into open fetal surgery to repair the MMC. Kristy said she was prepared to travel across the country for treatment, but instead found a local answer through conversations on social media.
“Luckily enough, I came across other people through Facebook who had their fetal surgery at the SSM Health St. Louis Fetal Care Institute, and they’d had such wonderful results,” Kristy says, adding that the team at the Fetal Care Institute worked to see her as soon as possible so she could begin testing to determine her eligibility for prenatal surgery.
Previously, MMC could only be treated after birth; following the nine-year-long Management of Myelomeningocele (MOMS) trial, doctors have found that repairing the MMC while the fetus is still in the womb can be beneficial to the baby’s outcome and its development. The Fetal Care Institute has one of the fastest growing fetal MMC repair programs in the country.
“I’m so glad I called! The entire team is so compassionate and really take the time to educate you and make sure you are comfortable.”
The Fetal Care Institute determined that Kristy and Adelaide were eligible for fetal surgery. At 24 weeks gestation, Kristy and Adelaide underwent the surgery at SSM Health St. Mary’s Hospital - St. Louis. 13 weeks later, Adelaide was ready to make her appearance.
Kristy says that when she delivered at 37 weeks, she was scared but also filled with relief that the many unknowns associated with her pregnancy would finally be over.
“Adelaide came out screaming, and she was absolutely beautiful. Everything I had feared about her and for her melted away,” Kristy says. “I had never felt so much relief in my life. We were instantly in love with her.”
Today, Adelaide is a typical toddler with a silly personality and a sweet smile. She loves music, learning new words, trying new foods and goofing off with her four-year-old big brother Nathaniel.
“Nathaniel knows that Adelaide has trouble with her leg strength and needs physical therapy to help her learn to walk,” Kristy says, adding that he helps her with some of her exercises. “He encourages her just like us and praises her when she reaches her goals. He just sees her as his normal little sister who is fun to play with, but who also sometimes annoys him just like anyone else’s little sister would.”
Kristy says that while it’s difficult to explain her experience, she hopes other moms can learn from what she went through.
“I’m a different person than I was before. I realized how resilient my family and I are. I’ve learned all about the special needs community that I would have never known before,” Kristy says. “I'm friends with amazing people that I otherwise wouldn't have met. I'm closer to some people from having gone through this.
“And I appreciate all that we have and all of our daughter's accomplishments so much more than I would have otherwise. Going through something like that really makes you look at life in a different way, and I'm grateful for it.”
Kristy says she and her husband, Keith, first found out about their daughter Adelaide’s spina bifida diagnosis at their 20-week ultrasound. Myelomeningocele (MMC), one of the most severe forms of spina bifida, is a condition where the fetus’ spinal cord fails to close during development. Some of its major complications include hydrocephalus, Chiari malformation and lack of movement in the lower extremities.
“We weren’t nervous going into it because we had already had an ultrasound at 16 weeks and everything seemed fine at the time,” Kristy explains.
Her OB-GYN told her that, this time, he’d identified abnormalities in Adelaide’s development, including a spot on her spine, a misshapen cranium and dilated ventricles in her brain. He wanted Kristy to see a specialist.
“I left that appointment and exited through the busy waiting room, my eyes blinded in tears,” Kristy says, adding that it was stressful few days before she could get in touch with a specialist.
When she did, however, the specialist was able to identify spina bifida and encouraged Kristy and Keith to look into open fetal surgery to repair the MMC. Kristy said she was prepared to travel across the country for treatment, but instead found a local answer through conversations on social media.
“Luckily enough, I came across other people through Facebook who had their fetal surgery at the SSM Health St. Louis Fetal Care Institute, and they’d had such wonderful results,” Kristy says, adding that the team at the Fetal Care Institute worked to see her as soon as possible so she could begin testing to determine her eligibility for prenatal surgery.
Previously, MMC could only be treated after birth; following the nine-year-long Management of Myelomeningocele (MOMS) trial, doctors have found that repairing the MMC while the fetus is still in the womb can be beneficial to the baby’s outcome and its development. The Fetal Care Institute has one of the fastest growing fetal MMC repair programs in the country.
“I’m so glad I called! The entire team is so compassionate and really take the time to educate you and make sure you are comfortable.”
The Fetal Care Institute determined that Kristy and Adelaide were eligible for fetal surgery. At 24 weeks gestation, Kristy and Adelaide underwent the surgery at SSM Health St. Mary’s Hospital - St. Louis. 13 weeks later, Adelaide was ready to make her appearance.
Kristy says that when she delivered at 37 weeks, she was scared but also filled with relief that the many unknowns associated with her pregnancy would finally be over.
“Adelaide came out screaming, and she was absolutely beautiful. Everything I had feared about her and for her melted away,” Kristy says. “I had never felt so much relief in my life. We were instantly in love with her.”
Today, Adelaide is a typical toddler with a silly personality and a sweet smile. She loves music, learning new words, trying new foods and goofing off with her four-year-old big brother Nathaniel.
“Nathaniel knows that Adelaide has trouble with her leg strength and needs physical therapy to help her learn to walk,” Kristy says, adding that he helps her with some of her exercises. “He encourages her just like us and praises her when she reaches her goals. He just sees her as his normal little sister who is fun to play with, but who also sometimes annoys him just like anyone else’s little sister would.”
Kristy says that while it’s difficult to explain her experience, she hopes other moms can learn from what she went through.
“I’m a different person than I was before. I realized how resilient my family and I are. I’ve learned all about the special needs community that I would have never known before,” Kristy says. “I'm friends with amazing people that I otherwise wouldn't have met. I'm closer to some people from having gone through this.
“And I appreciate all that we have and all of our daughter's accomplishments so much more than I would have otherwise. Going through something like that really makes you look at life in a different way, and I'm grateful for it.”
