Prenatal Spina Bifida Diagnosis: Rose's Story
Meet Rose
By the fall of 2020, the year had already brought many unprecedented moments as the world grappled with the COVID-19 pandemic. But for two bustling business owners living in Atlanta, Ga., life took yet another turn. Taylor and James were expecting a baby girl, but nearly halfway through the pregnancy, faced more unexpected news.
Taylor’s doctors thought she had placenta previa, a condition where the placenta covers the cervix. The doctors mentioned the baby might also have a hole in her spine — spina bifida — but a second opinion was needed. They recommended that Taylor see a specialist at Children’s Mercy to perform an amniocentesis — a test that checks for genetic or chromosomal conditions using a sample of amniotic fluid surrounding the baby. It was soon confirmed that baby Rose had fluid buildup in the brain (hydrocephalus) and spina bifida.
“Everything just felt like it moved so fast,” recalled Taylor. “All of it was just one big blur, but I remember that we had to move fast so that we didn’t miss the cutoff for doing a surgery in utero.”
With amniocentesis test results in hand, the Elizabeth J. Ferrell Fetal Health Center (FHC) assembled a team of experts to help support Taylor each step of the way as she weighed her options. “I sat down with surgeons, doctors, nurses, all the different departments including social services and billing — even the mental health services.”
That type of collaborative care is a hallmark of the FHC, which provides advanced care for high-risk pregnancies before, during and after delivery. Taylor and James eventually planted new roots in Kansas City thanks to the care they received here. Their time spent at CM inspired Taylor to join the Fetal Health Center Patient Family Advisory Committee (PFAC).
“I was so grateful that the CM team acted immediately,” said Taylor. “Sometimes, waiting can be too late. It’s something we’ve talked about recently in a PFAC meeting.”
Where do we go from here?
While James was still commuting back and forth from Atlanta, Taylor relied on support from her mother, who lives in Kansas City. The team of reinforcements from CM helped everything come together. Before surgery, Taylor visited CM twice a week to check baby Rose’s progress by measuring her size, heartbeat and fluid to determine whether a ventriculoperitoneal (VP) shunt was needed to help move excess fluid out of her brain into her abdomen.
In the moments before fetal surgery, Taylor sat with a CM chaplain and felt comforted by the care and attention given to both her and her unborn child. “It was my first surgery — ever!” she said, recalling her nerves. “They were very understanding and very patient with me. My nurses, Sarah and Christina, were fantastic with making sure that me and baby Rose were well taken care of during and after in-utero surgery.”
For FHC nurses like Sarah Rock, BSN, RNC-OB, CNOR, C-EFM, the admiration goes both ways. “I am always humbled by our fetal health center patients,” Sarah said. “So many times, our patients are going through possibly the worst time in their lives, but they show so much grace and optimism.
“James and Taylor continually showed up with bright spirits, optimism and grace. James drew this creative drawing that showcased the different aspects of labor and delivery and the Fetal Health Center. We still proudly display his work in our unit!”
Taylor holds a special place in her heart for her surgical team as well. “I had great surgeons,” she said. “CM really helped with perfecting the surgery so that more children with Rose’s diagnosis can have the opportunity to walk.”
The in-utero surgery was successful, but Taylor still had one more to go. Her C-section was scheduled for Dec. 24. It was a day she proudly remembers, as Rose was born gift-wrapped inside her amniotic sac.
“Sarah and Christina came in on Christmas Eve when they didn’t have to and I was extremely grateful,” said Taylor. The care team reminded her: it’s ok not to be ok.
“It was very comforting, especially with delivering during COVID and not having a lot of people able to be there with me. It was very hard doing back-to-back surgeries, but I had a great speedy recovery.”
From Sarah’s perspective, coming into work an extra shift on Christmas Eve was a “no-brainer.” “I am very thankful that our leadership supports our nurse/patient relationships, making it an option for me to be a part of this very special Christmas miracle!” she recalled.
Another element of Taylor’s village of support was a mentor from Parents Offering Parent Support (POPS). Although no two kids are exactly alike, the POPS program connects CM families with others who have experience facing similar health challenges for encouragement and advice.
There’s just one Rose
Today, Rose’s spine has healed and she walks without assistance. Taylor is an advocate for helping her daughter and other kids navigate and embrace their differences. She said, “Whether your differences are seen or unseen, they need to be talked about and explained to kids.”
She thanks the Kreamer Resource Center for being a helpful reference point for having those conversations with Rose’s classmates and teachers.
“Unfortunately, in a lot of communities that I’m in, I don’t know of an adult who has spina bifida or another child of color who has spina bifida,” said Taylor. “I had to force myself to stand outside of the situation and realize there is not going to be another case like Rose because she is the only “Rose” with this certain hole on her spine. There is no other Rose that has this VP shunt.”
Rose is now a bubbly 4-year-old who loves trying backflips and being a compassionate cheerleader for others. You’d never know she was on her fifth surgery at CM. She has also picked up her parents’ creative skills and loves to draw.
“She is such a giving and thoughtful person who won’t hesitate to give a stranger a hug,” Taylor explained. “I’ve had to learn to kind of let that go because she would hug people and they would immediately start crying, with uplifted emotion.”
Paying it forward
In their journey with Rose, Taylor and James are now paying it forward. They created a non-profit called Better Outcomes Foundation that helps provide resources and care packages to at-risk expecting parents. The foundation’s parent-centered services offer nine months of comfort — with a goal of improving mental health and increasing positive outcomes for baby and mom in the healing process.
“We realized that most of the care and attention just goes to mom, but mom’s care support person also needs resources,” said Taylor. “Sometimes that support person is just as drained, afraid or scared. We need to make sure both are ok and cared for throughout this process so they can continue to support one another and baby.”
Taylor credits the entire team at CM for helping her family through what can be an overwhelming and scary process. Her advice for other families going through it: “Make sure you take the time to find a team that you feel comfortable with. Have people in the room who are very knowledgeable and patient and willing to answer. You’re trusting them with your life and your child’s life.
“I do not know where or how Rose would be today if it wasn’t for the team at Children’s Mercy — they are amazing,” Taylor said.