Watching your child go into surgery can stir up many emotions. Candi Flegle knows those feelings. She watched her daughter, Natasha, get wheeled into heart surgery when she was only 4 months old. However, that emotional experience was made a little easier by the compassionate care provided by The Kid Experts® at Children’s Minnesota.
“Going through your child having surgery really is taxing, and I’m indebted to the ease these nurses and care teams helped me feel,” described Candi. “You made hard days feel doable.”
Diagnosis and birth
Natasha was diagnosed in the womb with Down syndrome and a complete atrioventricular (AV) canal defect, a heart problem in which the center of a baby’s heart does not form normally before birth, resulting in a hole in the heart. Approximately 50% of children with Down syndrome have a congenital heart defect, like Natasha’s AV canal defect.
Candi chose to give birth at The Mother Baby Center in Minneapolis, a partnership between Allina Health and Children’s Minnesota, because she wanted to be connected to the best experts available to care for her daughter during birth and after.
Soon after Natasha was born in September 2022, she was taken to the Level IV neonatal intensive care unit (NICU) at Children’s Minnesota’s Minneapolis hospital. After a few days in the NICU, Natasha was well enough to go home – but the family knew they would be back.
Heart surgery
Doctors often recommend babies with AV canal defects to have surgery during the first year of life. The goal of this is to correct the defect by closing the hole and reconstructing the valves of the heart. Natasha had surgery to repair the defect at 4 months old. Candi remembers that day well and how the actions of the nurses helped calm her nerves.
“As I watched the nurses carry our 4-month-old to her heart surgery, I could hear them telling her they were going on a great adventure and I felt so at ease,” described Candi.
After the surgery, Natasha went into heart block – a known risk of the surgery – which required her to have a pacemaker implanted.
“Everyone was good at explaining the procedure and rationale, what they were going to do and what to expect,” said Candi. “Natasha is doing so well today.”
Natasha will continue to have follow-up heart care with Dr. Brad Chu, cardiologist in the Children’s Minnesota cardiovascular program and The Children’s Heart Clinic.
“Natasha has shown remarkable resilience and done well throughout the treatment course for AV canal defect. Her and her family’s determination is truly inspiring,” remarked Dr. Chu.
Ear tubes
Natasha’s care journey at Children’s Minnesota continued in early 2024 when she was 1 year old and had surgery to have ear tubes placed by the ear, nose, throat (ENT) & facial plastic surgery program.
“As the nurse wheeled Natasha toward the [operating room], my husband told me he was surprised I requested not to accompany them,” recalled Candi. “But after watching how the team cared for her during the heart surgery, I trust the nurses at Children’s Minnesota and know they will keep our girl happy and safe.”
Family-centered care
During Natasha’s time in the hospital for the surgeries, the family always felt supported. Child life specialists would visit often to see how she was doing and give her toys based on how she was healing. They also would drop off items for Natasha’s older brother Gage and care packages for the whole family.
Medically complex care
Candi understands what it takes to care for kids in the hospital. She used to work as a nurse in the Infant Care Center at Children’s Minnesota, which is a step-down unit in our neonatal program.
“It can be stressful to have a medically complex kid. You never think it’s going to happen to you,” said Candi. “Don’t be afraid to ask questions. Sometimes you might not know what to ask but think of something later. Write it down so you can ask next time. We never left feeling like our questions weren’t answered or we weren’t heard.”