DENVER — In honor of Spina Bifida Awareness Month, one Colorado family is sharing their 2-year-old daughter's story and the support they found through Children's Hospital Colorado.
Elizabeth Bogdan crawls her way through a sea of toys, picking up pretty much anything in her sight as most 2-year-olds do.
"She's just such a happy kid, you know. She just loves making us laugh, she loves being silly, she loves exploring the world around her," said mother Ashley Bogdan.
Ashley and Cristian Bogdan's time as parents has not been without challenges. When they went to their anatomy scan to learn the gender of their baby, they were met with other news.
"The ultrasound tech, she just got very quiet and very somber. She's like, 'I can't tell you what the diagnosis is but I can tell you that I'm seeing something, and we'll have to have a doctor come in and give the official diagnosis,'" said Ashley.
The Bogdans were told their baby girl had an opening on her spine and was diagnosed with spina bifida myelomeningocele, the most serious type of spina bifida, according to the Mayo Clinic.
Spina bifida is a condition that occurs when the spine and spinal cord don't form properly, the Mayo Clinic explains. Symptoms can range from mild to serious and depend on where the opening is located on the spine.
"When we first got her diagnosis, we were told with spina bifida that she would be paralyzed from the waist down, so she'd be in a wheelchair her whole life," explained Bogdan. "She would basically have this cognitive impairment where she wouldn't know who we are, that she wouldn't be able to move, that we would have to be rotating her and making sure she wouldn't get bedsores and just the worst case scenario of everything."
The first-time parents were told of three options following this news: terminate the pregnancy, go through with postnatal repair, or try in-utero surgery known as a myelomeningocele repair. Ashley learned this in-utero surgery was offered at Children's Hospital Colorado at the Colorado Fetal Care Center.
"So, it just made sense to take that step forward and do something for our daughter in our moment that could then help her outcomes later in life," said Ashley.
Ashley underwent an evaluation to see if she and her baby qualified for the surgery.
"We have a pretty strict list of criteria that we call inclusion and exclusion criteria," said Dr. Nicholas Behrendt, a physician at the Colorado Fetal Care Center. "Basically, to take on an in-utero surgery, we want to make sure that the risk of putting the mom and the baby through that is worth the potential benefit."
According to Dr. Behrendt, a national trial done in the early 2000s indicated improved mobility and lower shunt rates following the in-utero surgery.
"This definitely is not a corrective surgery where it makes all of the side effects and all the medical issues associated with it go away. But by doing the surgery, we've shown that there is some improvement, especially in leg function. So some children that may have been destined to need to be in a wheelchair now have the ability to walk with a walker," said Dr. Behrendt.
Dr. Chris Derderian, a pediatric and fetal surgeon at Children's Hospital Colorado, also cared for Ashley and Elizabeth. He said while fetal surgery is not for everybody, it is an option for families to be aware of.
"I think it's really important that families, providers such as obstetricians and maternal-fetal medicine doctors, really know that fetal surgery is an option for this disease process, and at least give these families the opportunity to hear about the pros and cons of each side of it so that we can adequately provide what families think is the best thing for them," said Dr. Derderian.
Elizabeth, now 2 years old, is able to crawl and talk. Dr. Derderian said the impact of her growth extends far beyond the Bogdan family.
"It's a breath of fresh air to just take a pause and see the accomplishments that we can achieve as a team here," said Dr. Derderian.
The Bogdans hope that sharing their daughter's story during Spina Bifida Awareness Month will serve as a source of support and hope for other families facing the same diagnosis.
"We wanted to do anything possible to give our daughter the best outcome, especially when we were painted such a bleak picture of what her life was going to be like," said Ashley. "We were like, 'OK, there's something we can do now to help her in the future and give her the best life possible. We'll do anything.'"
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