A Doctor and Mother of a Premature Baby Helps Test a Mobile App for Parents of Special-Needs Infants
Nwando Eze, MD, MPH, is a neonatal fellow and mother of two practicing in Orange, California. When she was a pediatric resident, she helped test Estrellita, a smartphone app designed to support parents of infants with special health needs. Estrellita is supported by the Robert Wood Johnson Foundation (RWJF).
I smile as I note the increase in weight Ozuli has had in the last month. Having spent two-and-a-half months with Ozuli in the neonatal intensive care unit (NICU), I learned quickly that weight gain with minimal to no other problems was as close to an ideal situation as any parent could ask for in the NICU.
Ozuli was born two months early at 29 weeks unexpectedly. I was in my second year of pediatric residency and had a three-year-old already and had no problems with my previous pregnancy. So it was quite a surprise when at 29 weeks I began contracting intermittently and the contractions didn’t stop until Ozuli was born. I was put to sleep for the delivery and so did not get to see her until the next day, which just happened to fall on Mother’s Day. That day was the beginning of our two-month journey in the NICU—a journey I found to be the scariest and yet most blessed time in my life.
A few weeks before we were discharged, I agreed to enroll in a study testing a mobile health application that allowed parents of preterm infants to record ongoing health-related information about their infants. I was given a smartphone with the app in which I was to record events like daily diaper counts, daily weights, how fussy Ozuli was that day, my own daily moods, doctor’s appointment times, and follow-up visits.
I appreciated having the chance to use this app. I found the most helpful parts of it were monitoring her weight gain and observing the trend. Ozuli gained good weight during my time using the app so it was most reassuring to me. However, if she were not gaining weight the way she should, I had the option of notifying my doctor early so that any intervention may be initiated.
I also appreciated the part of the app that allowed me to record doctor’s appointments, what was discussed during the visit, and follow up appointments. Most families discharged from the NICU can have multiple specialists they must follow up with continuously. It can become overwhelming very quickly, even for a medical professional such as myself. The appointment portion of the app allowed me to keep track of when the appointments were and what plan the specialist had, so I could communicate these to other providers caring for Ozuli—especially her primary physician.
There were some portions of the app I thought might have worked better as options. The parts of the app that required recording my moods and Ozuli’s fussiness were harder to document accurately because of how subjective these emotions are. While in the NICU I was fortunate enough to be able to kangaroo Ozuli every day. (Kangaroo care in the NICU occurs when parents are allowed to hold their baby on their chest providing skin to skin contact which fosters bonding of parent and baby). This daily bonding with Ozuli in the NICU solidified our relationship which continued after we were discharged home. Even now, at 2 years old, Ozuli will occasionally come and lie on my chest just to be held.
These moments are very subjective, very special, and very different for every family and, as important as they are, difficult to record in an app setting. That being said, I can see the importance of recording mom’s moods which may be invaluable for screening for early post-partum depression, which is prevalent especially in mothers of NICU babies. Once, I had recorded a sad emotion and the app referred me to a nurse who might have linked me in with resources/support for depression should I have needed it.
Overall, I was grateful to have had an opportunity to be a part of the early trial for this app. Ozuli is 2 years old now and happy and growing well—a blessing I feel is partially due to this app. I am in training to be a neonatologist and I hope that, as a neonatal physician and a mother, there will be increased availability of mobile health apps like this one. That would be invaluable in the future care of premature babies who graduate from the NICU.
Read more about RWJF grantees who are harnessing the power of technology to advance a culture of health.