COLORADO SPRINGS — A Colorado Springs family is sharing their story of resilience after life-changing surgery.
It was at their 20-week ultrasound that Derrick and Mallory Leiting got the unexpected news.
"She said we see something wrong on the scan, and we need to refer you elsewhere. There's where it started, I couldn't get out of the doctor's office fast enough and I lost it," said Mallory.
Over the next ten days, the couple went ahead with their gender reveal party while they waited to see a maternal-fetal medicine specialist.
"Our gender reveal was hard, we were excited to have the party but at the same time knew the appointment would be the next day and was lingering in the back of our mind," said Mallory.
On the day of their appointment, Mallory and Derrick say they didn't know the extent of the situation or what to expect.
"She immediately said so what do you about Spina Bifida? We were like, nothing," said Mallory.
"She said so you guys know about the Spina Bifida right? We were like sorry ehm no," said Derrick.
For their daughter Emma, it was a severe type of Spina Bifida called myeloschisis. She had both an opening along her spine, spinal cord, and the surrounding nerve tissue that was exposed to amniotic fluid.
"We left holding pamphlets on abortion clinics and were basically advised there was going to be little to no quality of life. Not only were we given information on abortion clinics, but we even had a recommendation on one over the other," said Derrick.
The couple didn't let the information deter them, getting to work researching the condition and other alternatives.
"We did come across a Facebook Group on fetal surgery. People were posting photos and little videos of their kids and look there is a three-year-old climbing stairs," said Derrick.
"We saw one kid do ballet and tap," said Mallory.
That's when they turned to the Colorado Fetal Care Center for more information on the surgery.
"As soon as we got into Children's Hospital Colorado in Denver things started moving very quickly because we found out that if surgery is to happen, it needs to happen within a specific window of time for gestation," said Derrick.
They learned all of their options and knew right away that fetal surgery would give their baby the best chance at a normal life. It was at approximately 24 weeks, Mallory underwent successful surgery, but immediately started having contractions. The team at the CFCC worked hard to postpone Mallory’s delivery, which included performing two different cerclages.
In the few weeks that followed, Mallory lived in CFCC at Children’s Colorado but eventually went into labor early.
"At 27 weeks and three days, she decided she was coming. Enough is enough, she's being born. The plan is that you're supposed to have a c-section after the surgery to not interrupt the repair with her surgery. Nope, she's being born vaginally, breached, and the cerclages are still in," said Mallory. "Three months early so we were in for a long ride. Her lungs were really the biggest issue, we're still having oxygen needs," said Mallory
After 113 long days in the Children’s Colorado NICU, Emma was finally able to go home to Colorado Springs. The surgery giving their family hope for a better future.
"She's likely going to be able to walk, her nerves aren't damaged, it looks like she won't need a shunt which is what we would expect. Her ventricles are normal in size, and all of that is taken into context of her being a premature baby," said Dr. Ken Liechty, the Sandy Wolf Chair in Maternal-Fetal Surgery.
He says fetal surgery is a game-changer for children with Spina Bifida as far as outcomes.
"There have been incremental changes and improvements. Things like bladder catheterization to decrease the urinary tract infections that used to take these babies and kids when they were young because they would have sepsis or renal failure from it. The next step is to prevent injury to the spine and preserve function so they don't have to have a shunt or multiple surgeries that go along with having a shunt," said Liechty.
After going through this hard journey, Derrick and Mallory want to share their story of resilience with others.
"There is a positive outcome. We were so blindsided by the information initially then all of the talks about the life not being worth living, it's just scary to think about all of the ones who didn't get the chance. We want people to know that there are avenues to take but you have to get with the right people off the bat. Don't get discouraged upfront, make sure you're getting with the people who know what they're talking about," said Derrick.
Their leap of faith giving Emma the chance to possibly walk in the future.
