When Ashleigh and Nate went in for a routine ultrasound at 20 weeks, they had no reason to believe their baby was anything but healthy and developing normally. They were stunned when the sonographer shared her concerns for their unborn baby’s heart.
Coping with an unexpected diagnosis
"I would say that we were definitely in a state of shock at first, even though the sonographer was calm and reassuring about all the technological advances and the positive outcomes for babies diagnosed with heart defects," Ashleigh says. "It felt as though time was standing still and I couldn't quite catch my breath."
For Ashleigh and Nate, who met at SIUE and have been married since 2014, the next several weeks were a blur. They visited a pediatric cardiologist, who confirmed Tetralogy of Fallot and Atrioventricular Canal defect, which also led doctors to believe their baby might have Trisomy 21 (more commonly known as Down syndrome). A week later, a blood screen confirmed the diagnosis.
"My doctor was very kind, that’s the best way to word it," Ashleigh says. "She didn’t speak of terminating the pregnancy, she didn’t provide me with grim statistics. She didn’t give me any more reason to be sad or to worry. She just let me know that she was here for us, we could come in and talk to her if we wanted to and that she would do her best to answer any questions and to help in any way we needed.
"I shared the news with Nate when I got home, and to be honest, we didn't handle it extremely well at first. We were scared, angry, and sad about all of the challenges that our son, Walter, would face. The initial research that we did only added to those negative feelings."
Individuals with Down syndrome have an increased risk of numerous health problems, as well as cognitive, speech and physical delays. This genetic disorder is among the most common in the United States, affecting approximately 1 in every 700 babies.
"Sometimes it felt like a nightmare," Ashleigh says. "We were so scared about what was to come with our baby's health and development, what his childhood and adulthood would look like, and how his challenges would affect our daughter's life. We had so many questions and worries."
"We also found ourselves experiencing a degree of grief. We had a vision in our minds of the life that we thought our child would have and once we found out that he had Down syndrome, we felt a sense of loss."
Turning to SSM Health Cardinal Glennon Children's Hospital St. Louis Fetal Care Institute for care
Fortunately, it didn't take long to start seeing the bright side of things. After learning about the SSM Health Cardinal Glennon St. Louis Fetal Care Institute by a family member who works at SSM Health Cardinal Glennon Children’s Hospital, Ashleigh and Nate discovered a place where they could learn more about their son Walter’s condition and prepare to meet his special needs before he was even born. They were also able to meet with the team of SLUCare surgeons at SSM Health Cardinal Glennon who would repair Walter’s heart defect after birth and other medical specialists who would be involved with his care.
"I contacted Dr. Fisher to set up an appointment and he actually took the time to meet us on a Saturday," Ashleigh says. "He provided us with honest information and reliable resources, and that helped to settle our minds. From that moment, we knew that the SSM Health Cardinal Glennon St. Louis Fetal Care Institute was a special place. It only made sense to choose SSM Health Cardinal Glennon for Walter's care both before and after birth.
"Before we knew it, the grief that we were feeling was replaced with excitement for our baby boy's arrival. We were still anxious about his health, but we were surrounded by love and support and we knew that it would all work out."
Walter, who recently turned five months, was born via a planned Caesarean section and spent four days in the SSM Health Cardinal Glennon NICU after delivery. He will have corrective heart surgery in the near future.
"Until then, we are hoping that he continues to stay healthy, gain weight, and meet milestones," Ashleigh says. "Many of the fears that I had while I was pregnant with him have never even been an issue. Of course Walter has some extra needs, but caring for him hasn't been much different than caring for our oldest daughter when she was a baby. It's a lot more ‘normal’ than I had expected."
Getting specialized, coordinated care at the Down syndrome clinic
At SSM Health Cardinal Glennon, Walter is also able to visit the Down Syndrome Clinic, where he is able to meet with a team of doctors — including a development pediatrician, ENT and geneticist — all on the same day.
"The Down Syndrome Clinic gives us a piece of mind and makes us feel like we aren't doing everything on our own," Ashleigh says, adding that the comprehensive and collaborative approach at SSM Health Cardinal Glennon makes managing Walter’s care easier on her entire family.
"Dr. Kirby and the rest of the staff are so passionate and truly care about our little ones," she says. "They were genuinely so happy to see Walter and so eager to help us in any way possible. It was definitely a very personable experience." Ashleigh says that Walter has taught them so much already.
Ashleigh's advice to families in similar situations
"This experience has made us realize that we can't predict what the future holds for either of our children," she explains. "Even our typically developing child may have challenges someday that we weren't expecting. The difference is that some of Walter's challenges were presented to us before he was even born. But here's the thing — every child comes with their own set of abilities, characteristics, challenges, and needs. Our children are our children, and we will do everything in our power to help both of them reach their fullest potential. It might look different than what we had planned for our lives, but that's okay."
For other mothers facing a similar diagnosis, Ashleigh says it’s important to let yourself be sad.
"Let yourself feel all of the feelings, but don't stay there for too long," Ashleigh says. "Don't spend too much time feeling angry and disappointed because you will miss out on some really beautiful moments."
Her other advice? Don’t be afraid to lean on the people around you. Throughout Ashleigh’s pregnancy, the couple found a great deal of support from the Down Syndrome Association of St. Louis and the Down Syndrome Diagnostic Network, as well as their pastor, family, friends, daycare teachers and colleagues.
"This help has presented itself in so many ways," Ashleigh says. "We have been so grateful for all of the people in our lives throughout this journey so far."
