In February 2017, Jamie Montgomery found out she was pregnant with her first child. While the news was a surprise, she was excited to start a family. As an older expectant mother, Montgomery was warned that her baby might have health issues. After bloodwork, a chromosomal defect was detected (diagnosed as Down syndrome at birth), and her first ultrasound revealed a complex heart defect known as tetralogy of Fallot. It affects the structure of the heart and causes oxygen-poor blood to flow throughout the body. Despite these challenges and others, her son, Jamierson, is now a thriving 1-year old, thanks in part to the care he receives at SSM Health Cardinal Glennon Children’s Hospital.
“I knew the best thing I could do for my son was to educate myself,” Montgomery says of learning about the potential complications. Since Down syndrome was a possibility, she researched the condition and joined a Facebook group for moms. The cardiac defect was more difficult to prepare for, she notes, since it would require open heart surgery. Montgomery was referred to the St. Louis Fetal Care Institute (FCI) at SSM Health Cardinal Glennon and recalls her initial visit to the hospital as a bright spot during a difficult time. “It was the first good appointment I had during my pregnancy,” she says. “At other appointments, doctors kept telling me about developmental problems, and it put me in a bad place. The doctors at SSM Health Cardinal Glennon were calm and caring, and they gave me peace of mind.”
After Jamierson was born, Montgomery learned that he had other problems, including bilateral club feet and obstructive sleep apnea. For support, she met with Nancy McEuen, family navigator for the Bridge4STL Program, which connects at-risk parents with pediatricians, obstetricians and social workers. Montgomery has been unable to work a traditional job since Jamierson was born and says the support she receives from the hospital and Bridge4STL has been integral in helping with everything from care coordination and baby supplies to referrals to other agencies. “We were connected with the perfect people at the right time,” she says. “It was eye-opening to have people show me such support.”
The past year has not been easy for Montgomery and her son. “It can be overwhelming, but we make it work,” she says. “My baby has so much strength and courage. He inspires me.” In addition to heart surgery for tetralogy of Fallot, Jamierson underwent surgery to correct his club feet. He has regular visits at the Danis Pediatric Center at Cardinal Glennon with Dr. Joshua Arthur and Dr. Abraham Zabih. Montgomery is grateful for the attention her son receives from doctors, nurses and staff. “You’d think he was celebrity,” she jokes. “Everyone wants to know what’s going on with Jamierson when he comes in.”
He also participates in Reach Out and Read, the beneficiary program of the Glennon Card fundraiser this year. The program provides books to patients between the ages of 6 months and 5 years to promote early literacy. Jamierson already has received two books, and Danis Pediatric staff made sure the selections featured his favorite character Elmo or were written by Dr. Seuss. “We’re both excited to read them,” Montgomery says. “It’s wonderful that they remembered what he likes so he can have books he loves.”
Montgomery says this level of consideration is par for the course for hospital staff. She recalls Elizabeth Rhyne, PNP, working tirelessly to find a solution when Jamierson was having difficulty eating. Rhyne and McEuen also joined Montgomery and Jamierson at the area Step Up for Down Syndrome walk this summer. “They took time out of a busy weekend to support my son, and that really stands out to me,” Montgomery says. “I couldn’t have made a better choice of hospital and doctors.”
Pictured above: Jamie Montgomery with Jamierson.