Working with the Elizabeth J. Ferrell Fetal Health Center, Lylach Haizler-Cohen, MD, a maternal-fetal medicine physician and clinical geneticist, helped coordinate a complex plan of care. Beginning around 26 weeks of pregnancy, Everett’s mother took risdiplam daily and returned weekly for ultrasounds, bloodwork and monitoring.

See how specialized expertise, multidisciplinary care and an innovative prenatal approach came together to give Everett a stronger start.

Watch Everett's story.

Children’s Mercy provides comprehensive, longitudinal care for children with complex congenital heart disease—supporting patients and families from prenatal diagnosis through childhood and beyond. One patient’s journey highlights how coordinated subspecialty care, remote monitoring, and expanded regional services can significantly reduce the burden on families while maintaining the highest level of clinical oversight.

Diagnosed prenatally with a complex congenital heart defect, this patient received care through the Elizabeth J. Ferrell Fetal Health Center, followed by neonatal intensive care and multiple cardiac interventions, including open-heart surgeries, valve replacements and pacemaker procedures. Throughout her course, multidisciplinary teams at Children’s Mercy closely coordinated inpatient, outpatient and home-based monitoring.

Participation in the Cardiac High Acuity Monitoring Program (CHAMP) enabled daily transmission of cardiac and physiologic data from home, allowing early identification of clinical changes and reducing the need for frequent long-distance travel. As Children’s Mercy expanded specialty cardiac services in Wichita, the family was able to transition many follow-up visits and monitoring appointments closer to home—minimizing missed work and school while maintaining continuity with their established care teams.

Today, the patient continues to receive ongoing cardiology care, with improved cardiac function following medical therapy and device interventions. Access to Children’s Mercy subspecialists both in Kansas City and regionally has supported timely interventions, close surveillance and a quality of life that allows participation in school and activities.

Children’s Mercy has a commitment to partnering with community clinicians—offering advanced pediatric subspecialty expertise, remote monitoring programs, and regional clinics designed to keep care close to home whenever possible while preserving seamless coordination across the system.

Treating Genetic Conditions Before Birth

At Children’s Mercy in Kansas City, our teams are advancing care for certain genetic conditions by beginning treatment before a baby is born. This approach, known as in utero treatment, aims to support a child’s health as early as possible.

This year, the Elizabeth J. Ferrell Fetal Health Center cared for a baby diagnosed before birth with spinal muscular atrophy (SMA) Type 1, a genetic condition that causes muscle weakness beginning in infancy. Without treatment, children with SMA Type 1 may have difficulty sitting, walking or breathing on their own.

During pregnancy, the mother was treated with Risdiplam, a medication that helps improve muscle function. By starting treatment before birth, the care team was able to influence the baby’s early development. At delivery, the baby showed strong movement and a vigorous cry.

The team is also currently caring for a pregnancy affected by cystic fibrosis. During pregnancy, the mother is being treated with Trikafta, a medication that helps the body move salt and water more effectively. Early treatment may help reduce thick mucus buildup and support lung and digestive health from the start of life.

These early interventions represent continued progress in fetal care and reflect Children’s Mercy’s commitment to advancing treatment options and improving outcomes for families.

Prenatal Genetics Evaluation and Testing at the Fetal Health Center

Families may benefit from a prenatal genetics evaluation during pregnancy or while planning for pregnancy. Reasons why include a personal or family history of a genetic condition, having a child previously affected by a genetic disorder, higher‑risk results on prenatal screening, learning that both parents are carriers for the same condition or unexpected findings on ultrasound.

At Children’s Mercy’s Fetal Health Center, Lylach Haizler‑Cohen, MD, provides care for patients with complex prenatal needs. She is specially trained in both maternal‑fetal medicine and clinical genetics, allowing her to care for both mother and baby while helping families understand genetic information and testing options.

Services include detailed ultrasound evaluations, genetic risk assessment and counseling and diagnostic testing. Available procedures include chorionic villus sampling (CVS) and amniocentesis.

CVS is typically performed between 10 and 13 weeks of pregnancy and involves collecting a small sample of placental tissue. Because it is done earlier in pregnancy, CVS can provide genetic information sooner. Amniocentesis is usually performed after 15 weeks and involves collecting a small amount of amniotic fluid using a thin needle guided by ultrasound. Both tests provide important information to help families understand their baby’s health and make informed decisions.

For Professionals

Few maternal‑fetal medicine practices currently offer CVS. This early diagnostic test can be valuable in several situations, including higher‑risk noninvasive prenatal testing results, a prior child affected by a genetic condition or congenital anomalies identified on early ultrasound.

If you have a patient who may benefit from CVS, the best way to refer is to fax a referral to the Fetal Health Center at (816)302-9605. For urgent consults, providers may also call (816)855-1800 to confirm the fax was received.

Children’s Mercy performs both transabdominal and transcervical CVS. The evaluation includes genetic counseling by a certified genetic counselor, a detailed ultrasound assessment, the diagnostic procedure and follow-up ultrasounds as needed.

Dr. Varberg is the principal investigator of the Varberg lab at the Children's Mercy Research Institute. The Varberg lab explores how placental function and pathology contribute to pregnancy success and the developmental origins of disease. 

The Lawrence D. Longo, MD Center for Perinatal Biology at Loma Linda University is a world-renowned research center in the field of maternal health and developmental physiology. The center constitutes a multidisciplinary group with a unique and broad perspective ideal for research, and committed to the training of basic and physician scientists.

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.”

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.

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.”

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.