A mother and founder's insider view of the pitfalls of pediatric health

For the past 35 days, I’ve shared my co-worker’s bed.?

Don’t freak out: it’s my four-year-old daughter.

I’m the co-founder of a machine learning startup for answers on children’s health, Sleuth. It’s inspired by my daughter’s health journey, and up until this past July, I had a good grip on what was going on with her.?

Our world fell apart literally overnight. After years of managing symptoms without a solid diagnosis, we found the source of her issues and it was bad. Fifty percent of kids who need immediate intervention don’t get it — we are one of many families who search multiple years for answers.

She had one of the most serious surgeries a small child can go through. We found one of the world’s best surgeons who told us that she’d be home within 2-5 days. And yet, here I am, 35 days in with stops in the pediatric intensive unit, the general ward, and now at in-patient pediatric rehab.?

I’m typing this in our shared room, next to the twin-sized hospital bed we share. She does a full day of work of non-stop therapies: speech, occupational, physical, and play. My job is full-time as well, making sure she’s on the right meds, off the wrong ones, monitoring her needs and progress, battling with insurance, and quite honestly, tending to both of our mental health.

I’ll write more on this as I process my thoughts, but I want to offer some of the starkest observations of these past 35 days.

— Electronic Medical Records: We have moved medical teams from New York Presbyterian to our current rehab clinic, and our therapists need her past diagnostic results to understand my daughter's baseline - it is almost unethical how hard it is to get these vital records that belong to us. Not to mention, many EMRs are inaccurate - I've corrected two diagnoses on my child's records that would lead to a lot of downstream interventions that would just be inappropriate.

— Medical supplies: I’m fairly sure that my daughter has killed the equivalent of three trees just by how many napkins we use to manage one of her symptoms. But there are no sustainable products to help us. COVID precautions have understandably exacerbated the fear of germs spreading across supplies, but it’s heartbreaking to see unwrapped formula, scissors, wipes, syringes, etc. get disposed of. A nurse had been in our room for 15 seconds and threw an unopened packet of Miralax after I decided to postpone the med until the next day; it could’ve easily been sanitized and reused. Medical wastage is a huge hospital expense ($12B) that then transfers to families when they get discharged home and have to pay exorbitant prices for medical devices whether for something simple like mouth swabs or bigger like mobility devices.

— Patient advocates: There is a direct, linear relationship between an informed, engaged parent and the depth of care a child receives. But that requires two things: the means to stay with your child AND access to reliable information. Both of these are hard. I’m surprised that there is a lot of room for caregiver/parent input in a hospital setting, but you have to be available to do it and know what you’re doing.?

— Doctors don’t have all the answers and they know that. If your child’s health is a puzzle, doctors can help with about 20% of it. The passing of time, your child’s individual body, and other experts - like therapists, and educational professionals - can help figure out some of the rest. And as a parent, the best resource continues to be other parents (just ask any parent of a child of a g-tube that has fallen out).

— Good nurses and doctors are godsends. They have hard, demanding jobs, especially in pediatrics where there are two stakeholders on the patient side. Physician burnout isn't an "if", it's a "when". I’ve likened our best nurses to a female MacGyver; replacing my little one’s feeding tube has led to so much trauma, and they have tried trick after trick to get every last inch of use from it so we don’t need to replace it. These things matter more than words can convey.

Some days, I feel like I could write a book about our experience, but for now, I wanted to share a few raw thoughts from “the inside”. There is an immense amount of trauma related to these experiences, and I’m thankful that most of it will be poured into Sleuth — there is just so much work to be done in children’s health.