Braelyn and her twin sister, Brielle, were born full-term in December of 2018 and were healthy as far as we knew. Their births were joyous and free of any complication. Just three weeks later, that changed. Braelyn appeared to be breathing rapidly and was having what we came to learn are called retractions. She was taken to her pediatrician's office and during the exam, her pediatrician appeared to be listening to her heart longer than usual. She then said she would need to get a cardiologist. Braelyn was taken for an echocardiogram right away. We discovered that she had a ventricular septal defect or a hole in the lower chambers of her heart that would likely require surgery. Her oxygen level also was around 90, so it was recommended we go to the hospital. Braelyn was admitted and a round of tests revealed that she had a common coronavirus (this was pre-Covid-19). She was hospitalized for ten days on high flow oxygen and narrowly escaped being intubated.
After her discharge, we had an appointment with a cardiologist to manage Braelyn's heart condition, but we never made it because just two weeks later she got RSV (Respiratory Syncytial Virus). She was hospitalized in Green Bay where we live, along with her twin who also got RSV. However, after a week Braelyn was continuing to get worse and the critical care doctors thought that she needed to be transported to Children's Wisconsin to be placed on ECMO. The doctors explained this would give her lungs a chance to rest and heal. It sounded like a great idea! Little did we know how serious and how risky ECMO is -- but fortunately for Braelyn turned out to be lifesaving.
Braelyn was transported on February 13, 2019 and placed on ECMO two days later when her oxygen level was barely hovering at 70. She had developed pneumonia and severe Acute Respiratory Distress Syndrome (ARDS). Braelyn had already been on a ventilator for a week when she was placed on ECMO. Several days after being on ECMO, she had a hemorrhage in the right frontal lobe of her brain. Despite that, the neurosurgeon had an optimistic outlook for Braelyn. Braelyn was on ECMO for 13 days and remained on the ventilator for another two weeks. She recovered several more months in the hospital.
Braelyn had a g-tube placed as she lost her ability to suck and eat while intubated and on ECMO. After she returned home, she spent many months doing intensive therapies and so far has no adverse outcomes due to ECMO or her brain bleed. Her g-tube was removed after having it for two years. Today she walks, talks, plays with her sisters, and does all the things we weren’t sure if she’d be able to do.
ECMO was definitely intense and scary, but our family is so grateful for this invention, because without it she would not be here.
Braelyn went on to have open heart surgery to repair her heart one year after she was on ECMO. We’re thankful every day for how far she has come and look forward to what her future holds.
Kristyn Bates
(Braelyn’s Mom)