The COVID-19 pandemic has tested resiliency worldwide, pushing people and entire societies far beyond anything they had anticipated. We who have children with pediatric feeding disorder already know what it is like to have something beyond our control readjust our limits far beyond what we thought possible. Despite this experience, the arrival of COVID-19 and it’s barely mitigated spread have added cruel new challenges to our struggles with caring for and nourishing our children. In the spirit of sharing and mutual support that runs through Feeding Matters, I’ll share some of my family’s experiences during the COVID-19 pandemic. I hope the hearing of our story will be as helpful as the telling.
Far and away the most striking similarity of COVID-19 and caring for a child with a feeding disorder is isolation. My son is still an infant, and his feeding refusal began in earnest in mid-January 2020. What used to be eight 45 minute sessions with a bottle exploded into elaborate and constantly changing rituals to try to coax him to drink milk and then put him to sleep to dream-feed.
With the placement of his NG tube in mid-February, some of the burden was relieved, only to be replaced with constant fretting and delays to make sure the pump did not trigger vomiting. Remarkably, once the country started to get serious about COVID-19 in March, I had already been almost entirely socially distant for roughly two months. The only difference was that where everyone else was isolating out of self-preservation or solidarity, it was our desperate effort to nourish our baby that had sequestered me and to a lesser extent my wife. We learned how all-consuming feeding disorders are because they cut you off in the same way as when humanity tries to save itself from a devastating disease.
While COVID-19 made everyone isolated like us, it also raised the stakes of every cough and sniffle. My son mercifully is not immuno-compromised, but COVID-19 could cause havoc by making my wife or myself ill, and it could kill my mother-in-law, who is staying with us. Unfortunately my wife’s work as a physician means that not only is she required to continue working, but that she is regularly exposed to COVID. Just last week I came down with what was ultimately just a cold, but until the COVID test came back, I needed to isolate myself from the entire family within our small apartment. I wouldn’t want to overstate our hardship, but my son does not understand social distancing, and it was disruptive for me, his primary caregiver, to essentially vanish. Unfortunately, we will continue to live on this knife’s edge for the foreseeable future.
As it became clear that this multi-layered isolation would not end soon, and as we realized that the difficulties and stresses of our son’s would not abate, we finally followed up on our doctor’s recommendation of Feeding Matters. I can say without hesitation that Feeding Matters is the best antidote to the isolation and doubt of caring for a child with a feeding disorder. We have been glad to attend the semi-monthly virtual support group meetings, and the staff has been extraordinarily empathetic and attentive in reaching out not just for our initial intake, but several times since.
However, without question the most helpful part of the program has been the individual family coach. Physicians and therapists have so far generally been kind and full of advice, but we needed a relatable connection to someone who has had to live with our issues and has come out the other side. Our family coach has been warm and friendly, and has gone beyond simple mentoring to virtually open up her home and her family to us. She has even had her mother talk with my mother-in-law about the ins and outs and do’s and don’ts of helping us help our son. After all this time of lonely ounce counting and desperately hoping for a break-through, this contact with someone who understands has been literally indispensable.
From the bottom of my family’s heart, we would like to say thank you to Feeding Matters.