November 2016: I just left a routine ultrasound in week 15 of pregnancy, told that my son has a bilateral cleft lip. I’m devastated and my initial web search yields this fact: 85% of the time, it is a physical manifestation and can be surgically repaired; 15% it is one expression of a terrible chromosomal syndrome. I would now face 5-6 weeks of tests, none of which I had planned on or knew much about. I left the medical center and began researching everything I could about all the syndromes, the tests and their risks, cleft lip treatments, surgical techniques. I read hundreds of websites, some valuable and some less so. I would spend the next 6 weeks anxiously awaiting a barrage of test results; once I knew that it was not a chromosomal issue, I would spend the rest of pregnancy having more regular tests and ultrasounds than I had during the previous pregnancy, waiting to see how this would all go for us.
I joined the helparound team because I connect personally to our mission to support families facing life-changing diagnoses. When I first began discussing the opportunity with Yishai in August 2017, I had just come off of almost a year of navigating the diagnosis, treatment and surgical repair of my second son’s cleft lip. Though not a chronic condition, I identified with the issues we discussed addressing: dealing with a diagnosis, learning about a condition, navigating a complex treatment regimen, preparing for a new unknown reality.
I initially met Yishai and Shlomi a few years ago while working for a massive pharmaceutical company’s digital accelerator. We were in close touch with them and I watched as helparound iterated beyond the diabetes community to its new goal: provide stellar mobile support to small patient populations. I was impressed by many things, but two qualities stood out in particular: their dedication to helping people and their understanding of the possibilities for technology to make people’s lives easier.
April 2017: Oliver was born. As soon as I saw him, my anxiety melted away and I was enamored… and also realized that being a mother to this little guy would just be a bit more complex than my previous experience. I met with the surgeon and periodontist within a day of his birth to begin preparation for surgery. The brilliance of treating a cleft lip is they utilize the natural high speed growth of babies to close the cleft and improve surgical outcomes; in our case this would involve taping and an “outfitted” oxygen tube that would help shape his nose. We would be responsible for changing and cleaning all this twice daily. The next 4.5 months until surgery would be a whirlwind of doctor’s appointments, calculated weight gain, blood tests and so on. My research regimen continued and I learned everything I could about any potential side effects of his cleft, what preventive checks I must ensure he has, how to double feed him so he gained enough to have surgery at such a young age. I spent those months organizing my son’s reality around the success of his surgery. Time passed, he grew, we got through everything and the surgery was a glowing success. We will maintain a light schedule of check-ups for the next few years and life has returned to its rhythm.
Sitting across the table from Yishai in August 2017 talking about the navigation of complex treatments for chronic diseases, I felt connected to the idea that these people need mobile support. I did everything on my phone with Oliver, from research to setting appointments to ordering taxis, but I used a combination of apps that I found to serve my needs. Easily finding information on a disease in the initial shock following a diagnosis or the ability to ask others with the same experience questions at any time is an invaluable resource, especially on your phone as you rush to to the next appointment or test. Knowing you have a comprehensive resource and a peer community can make the whole picture seem less daunting. As we began brainstorming more possibilities this mobile support platform could potentially offer, it was blatantly obvious that this is the way I want to spend my workday: making it easier for mothers* to navigate their children’s treatment.
*Disclaimer: Of course I want to make it easier for all caregivers, but in that moment I have to be honest that as a mother I thought about the mothers.