15/10/2025
Organizing the Unimaginable: How the mejo App Helped Our Family Navigate CHD Care
Written by: Ashley Kollme, Sophie’s mom and caregiver
Our precious daughter Sophie is our youngest of five children and was born with an extremely rare genetic condition caused by a mutation in the GATA6 gene. GATA6 syndrome can cause heart defects, hypothyroidism, and GI issues. Prior to knowing about Sophie’s genetic condition, our Maternal Fetal Medicine specialist diagnosed her with a rare and complex congenital heart defect (CHD) called Truncus Arteriosus.
Sophie came home in August 2023 for the first time after 86 days in the hospital. Her four older siblings were louder than the beeps and alarms of the ICU, making for a smooth transition. She had a feeding tube, twice-daily respiratory treatments due to residual lung disease, a total of 23 syringes of medication given per day, and many regular follow-up appointments with her specialists. She was on a detailed, months-long schedule to slowly wean off of heavy pain medications with methadone and clonidine, where we had to carefully track any symptoms of withdrawal.
Every time I visited a specialist, therapist, or her pediatrician in my sleep-deprived haze, I was bombarded with the same questions that I felt I had answered many times before, or that should have been highlighted as the most basic information in her chart.
Thankfully I now have mejo! I wish I had found this app the moment we first came home with Sophie.
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