Written by MIA W. DORON, M.D.
I believe whole-heartedly in the mission of Graham’s Foundation and am honored to be on the Executive Board.
From my many years as a practicing neonatologist, and from sharing the pains and joys of my sister’s experience after delivering 27-week twins, I know that parents of preemies feel terrified, overwhelmed, isolated, and confused, and often don’t know where to turn for support. My professional life has been devoted to providing that support. So when I learned of Graham’s Foundation and its vision – dedicated to a world where no parent goes through the journey of prematurity alone – I said, “Yes! Sign me up for that!”
Graham’s Foundation has all the pieces in place to achieve that vision: beautiful care packages for parents filled with useful items and information; empathetic and knowledgeable peer mentors to provide on-going one-on-one support; a tremendous all-round resource in the MyPreemie app to guide families through the chaos of an early birth and hospitalization, through the excitement and anxieties of homecoming and the first few years of their preemie’s life; a large and engaged on-line community; and a staff always striving for excellence.
In the next 10 years, Graham’s Foundation aims to have a presence in every hospital NICU, so all parents and medical providers are aware of its services, and no one with a premature baby has to travel that road alone.
NOTES ON THE MyPREEMIE APP AND FEEDING TRACKER
The MyPreemie app came about after my co-authors and I finished writing the 2nd edition of PREEMIES: The Essential Guide for Parents of Premature Babies. Cell phones were still fairly new then, and were not allowed in many NICU’s for fear the signal would interfere with monitoring equipment. But we realized they were quickly becoming the tool young people turned to for information of all kinds, to connect with others, and to help organize their lives.
We saw a lot of parenting apps for full-term babies, but none for preemies. These apps not only did not meet the needs of parents of premature babies, but their information could actually be wrong if applied to a preemie, and they could make parents feel bad because they weren’t able to participate in the ordinary events of babyhood and parenthood those apps were celebrating.
So we created an app to guide parents through the experience of prematurity. MyPreemie puts relevant medical information at parents’ fingertips; identifies and prompts them to record significant events that are specific to premature babies; normalizes the turbulent emotions and unfamiliar steps from an early birth, through hospitalization, through the transition home and a preemie’s early years; provides a quick and easy way to keep friends and family informed; makes order out of chaos by giving sample questions to ask medical staff and provides tables and graphs to track a baby’s progress; brings color and warmth to the sterile environment of the NICU with beautifully hand-drawn app pages; and more.
We are continually trying to improve MyPreemie. For example, we translated the app into Spanish, and are working on a Chinese version, to reach and help more parents. In a few days we will be introducing a Feeding Tracker, with entries aimed at logging the particular events, issues, and milestones in a premature baby’s feeding journey. These are quite different from the average full term baby’s, and are not easily or adequately tracked with the baby feeding apps that are currently available. We are grateful that MyPreemie has been downloaded by tens of thousands of people around the world, and sincerely hope it is making one of life’s most trying and traumatic times a little easier.
-Dr. Doron is a neonatologist, co-author of the book, Preemies: the Essential Guide for Parents of Premature Babies, and co-creator of the MyPreemie app. –