“From a mother’s standpoint — and you know mothers have a biased opinion — I think he is doing great. I think the Lord aligned us with the right doctors and the right people at the right time. They are my family,” says Jamie Montgomery, the mother of 1-year-old Jamierson.
Jamierson was born on August 14, 2017, with a “significant medical history,” says Elizabeth Rhyne, pediatric nurse practitioner and Jamierson’s primary contact in Danis Pediatric Center at SSM Health Cardinal Glennon Children’s Hospital.
“He has trisomy 21 Down syndrome. He had club feet, congenital cardiac disease that required surgery, developmental delay, some laryngomalacia, hypotonia, obstructive sleep apnea, constipation and a lot of other issues,” Rhyne says.
Laryngomalacia is a larynx abnormality that allows the airway to collapse when air is breathed into the lungs. Hypotonia is decreased muscle tone. Prenatal genetic testing and an ultrasound had identified Jamierson’s Down syndrome and tetralogy of Fallot, a complex heart defect, so he became a patient at SSM Health Cardinal Glennon before his birth. Jamie visited the St. Louis Fetal Care Institute for weekly ultrasounds.
After Jamierson was born at SSM Health St. Mary’s Hospital, primary care physicians from Danis Pediatrics began visiting him there. Nancy McEuen, family navigator for the Bridge4STL program at Danis, also visited and became one of Jamie’s support systems. The program coordinates partnerships between pediatricians, obstetricians and social workers to maximize supportive care for at-risk parents. “If I did not have Bridge4STL and the people at Danis, I don’t know what I would do,” Jamie says. “I am a single parent and have no family. We have been here for more than 100 appointments since Jamierson was born. I always thank God for the people he places in your life.”
Jamierson’s complex issues have guided him to many specialists, Rhyne says. “He has seen cardiology, genetics, the feeding team, otolaryngology,orthopedics, gastroenterology, physical and occupational therapy.” He has undergone heart and foot surgery.
He also is enrolled in First Steps, a Missouri program that provides early intervention services to children who have disabilities or developmental delays. Jamierson’s Glennon family has given him more than medical and surgical care, his mother says. “They sat with me through labor and all the way through his surgeries. His heart surgery lasted six hours. You don’t know how grateful I am. I don’t know what I would have done without them being there for me.” Jamie became a mother at the age of 37 and often jokes that “Jamierson is my first child and my last. I have no clue what I am doing! I’m just winging it.” Her devotion, however, is a key to Jamierson’s progress and future development. “His care, even making appointments, can be very complex,” Rhyne says. “Last week they were here three times because they couldn’t get appointments on the same day. Jamie has no transportation so she relies on medical transport to get her here and get her home. She doesn’t miss appointments unless her ride doesn’t show up. “It has been such a victory for mom to watch him advance and grow. He is doing very, very well because of her.”
As Jamierson grows up, Rhyne says, “I think he will do quite well, although it is difficult to know about a child with trisomy 21. Their mental and physical abilities might have some limitations. We are watching his development very closely to maximize his potential. Every time I see Jamie I tell her, ‘You are doing such a great job. He is going to be great because of you.’” One thing Jamierson doesn’t lack is energy, Jamie says. “He goes a mile a minute from 5 a.m. until he goes to bed at 8 p.m. I try to figure out creative things to do all day to keep him busy. If he’s not playing we’ll read. And they have given me therapies we can do at home.” Jamierson also has taken a liking to the music his mom plays for him. “He loves Beethoven and Chopin. He sings along with it — ‘La, La La!’” “They tell me he is doing so well because of the way I love on him,” Jamie says. “I am not working now so I can’t give him a lot of materialistic things, but what matters now is the love he is getting. When he is older I will be working and I can get him stuff then.”
Jamierson may need further surgery to address leaky heart valves. Developmental therapies will long be a part of his life. Jamie believes her support network at SSM Health Cardinal Glennon will give her the strength to deal with whatever the future holds. Jamierson often is met just outside the elevators at the entrance to Danis Pediatrics when he visits. Members of the staff pass him around for hugs and kisses. “I know people are probably going to treat my son differently due to his Down syndrome,” Jamie says. “They don’t question it here. They treat us like family.”