Dear Ms. Midler:
My name is Missy Miller, I am a Councilwoman for the Town of Hempstead and I am writing you in response to your recent tweet concerning the national formula shortage. While much has already been said by parents of babies regarding your statement on the topic, I would like to offer you a different point of view – from the mother of a medically complex adult who requires formula.
My son Oliver is a beautiful, brave boy who has many health issues stemming from a stroke. As a result, Oliver has never been able to eat regular food or drink standard formulas/beverages – forcing him to spend the first 10 years of his life on IV nutrition. After a decade of obstacles, Oliver finally graduated to drinking a specially prescribed amino acid medical formula, which remains his sole source of nutrition. Any disruption to the supply of this medical formula would prevent Oliver from receiving the nutrition he needs.
As you can imagine, the current nationwide formula shortage has proved devastating to Oliver’s wellbeing, and has seen me scramble to source the sustenance my son requires.
One of the most jarring aspects of this disastrous supply chain breakdown is the lack of communication by manufacturers to caregivers of those reliant on formula. I learned of this shortage – which was caused by a major recall of formula – through a Facebook group. I received no notice from the companies I have been obtaining Oliver’s formula from, and was given no warning that my son’s quality of life was in serious danger. After countless calls pleading for assistance, the only advice I received from the manufacturers was to “contact the hospital.”
Having been left out in the proverbial wilderness by the manufacturers, and with the formula Oliver needed nowhere to be found, I consulted with my son’s team of physicians who began the process of attempting to find an alternative formula that would meet his unique needs. It is now May – 3 months since the recall that put my son’s health in jeopardy – and Oliver has had to switch formulas 3 times so far. Each time Oliver has made a switch, he experienced a variety of uncomfortable side effects that required him to receive medical care, with the most recent reaction involving a hospital stay.
As I write this, Oliver has only 3 more days supply of the formula he is using now. Once it is exhausted, Oliver will have to switch formulas again, almost certainly triggering the frightening side effects that imperil his health, degrade his quality of life, and require emergency medical care.
Oliver cannot just eat something else. There is nothing else. There are thousands of people in this country who rely on these prescribed medical formulas as their sole source of nutrition. I am 58 years old and certainly cannot “just try breastfeeding” my 22 year old medically frail son.
This shortage has been nothing short of petrifying for my family and scores of others facing similar circumstances. As a parent, you want to make sure you are providing everything your child needs to have the best quality of life. The fear of not being able to feed your child is real.
I recognize that most people have no idea about families like mine so I can’t blame them for thinking this shortage only affects those with babies. It affects so many others, who truly have no alternatives. I would welcome the opportunity to talk with you to help you understand.
Sincerely,
Councilwoman Melissa Miller
Email: MeliMil@tohmail.org
Phone: (516) 812-3523
