Special Needs Families Navigate the Baby Formula Shortage

by Shana Bull May 17, 2022

baby having formula

When my son was two weeks old, I found out my breast milk was not giving him enough nutrients to grow properly. It was a gut punch to an already hard time in my life: learning how to be a new mom.

I was extremely sleep-deprived and my son was constantly hungry. I soon learned that the issue wasn’t actually my milk supply, but that he has a genetic disease called cystic fibrosis (CF).

CF is a chronic, progressive disease that causes problems digesting food and absorbing nutrients due to a buildup of thick mucus in the lungs and digestive tract.

Even though I knew none of it was my fault, my inner monologue made me feel like a failure as a mother, and I was devastated.

It's been a long and difficult journey since my son was diagnosed. Throughout his life, he has had to take enzymes and supplemental formula just to get the nourishment he badly needs. Even now, at six and a half years old, most of the nutrients he consumes come from a special high-calorie formula delivered through a feeding tube in his stomach that he received when he was two years old.

In order to stay healthy, people with CF need to consume more calories. Even with enzymes, their bodies cannot break down everything they eat or correct their difficulty with absorbing nutrients.

Formula has become a lifesaver for our family. Literally.

Why are parents in this mess?

The U.S. produces 98% of the infant formula it consumes, so when something happens at one factory, it impacts the entire supply chain.

Abbott Nutrition, maker of Similac formula, the largest producer of formula in the country, voluntarily recalled powder formulas because of potential contamination from their manufacturing plant in Michigan.

Abbott just announced that they are able to restart production of their baby formulas after an FDA inspection, but parents might not begin seeing formulas like Alimentum, EleCare, and Similac stocked on store shelves until July.

A dry June for formula-feeding parents

Parents of babies who rely on formula are facing a crisis right now as store shelves across the country lie bare.

This has left parents scrambling to find formula, with some resorting to buying it from unregulated sources online, or even making their own (the FDA doesn’t recommend making homemade baby formula). While there are some steps that parents can take to ration their existing supplies, the reality for some families is stark: this shortage may mean going without formula entirely for a period of time.

Low-income families who rely on government assistance to purchase food are especially burdened by this crisis. The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides free or low-cost formula to eligible infants and children up to age five. However, WIC only covers a limited selection of pre-approved formulas. If the family's usual brand isn't stocked, they must get approval from a doctor to switch to another covered formula.

This process is time-consuming, inconvenient, and can result in disruptions to a baby's feeding schedule. These challenges underscore the importance of government assistance programs like WIC and SNAP, programs that provide vital support for low-income families during times of crisis—but especially now, parents need to be met with more efficiency and accessibility.

Parents of babies who need specialized formula

When it comes to baby formula, there is no single “perfect” type or brand. Every baby is different, and what works for one may not work for another. Getting access to a specialized formula is especially important for babies with allergies or medical conditions that entail a specific set of needs.

Teresa is an East Bay Area mom with a daughter who has Turner syndrome, a chromosomal condition that affects development. She drove from store to store in her hometown, shaken by the empty shelves, so she asked for help in local parenting Facebook groups.

Within a day, another mom in the group was able to get two cans of lactose-free Pregestimil Infant Formula Powder; Teresa was able to pick them up the next day.

This is happening in Facebook groups all over the country.

Social media has helped parents gain access to formula

Social media has become a lifeline for many parents of infants with special needs. Thanks to social media, people are posting pictures of extra formulas they have, sharing information from stores, and even offering to go to stores to look for specialized formulas for parents in their area. This broad-reaching support alleviates some of the stress for parents who are already dealing with so much.

Online, there are a lot of questions and mean-spirited takes, like “why can’t women just breastfeed?!” Misinformation runs rampant as well. There are many experts who are sharing their knowledge, and parents can learn from them. But it's hard to know who to trust online. For any parent looking for information about formula, your best bet is to connect with your local pediatrician—especially when someone says something online that sounds too good to be true.

Many moms looking to help are offering their own breast milk to others on Facebook groups or NextDoor, and they are being advised to connect with their local milk banks to help (it is not recommended to use breast milk from people you don’t know personally).

Nonprofits are stepping up to help parents

Nonprofits have been quick to respond to the needs of parents and babies, especially in NICUs (neonatal intensive care units) across the country. Christie Coursey, Executive Director of Breastfeed Atlanta, said that reps from local formula companies have stepped up to make sure that babies in the Atlanta area NICUs are covered.

These centers are critically important for supporting premature or sick infants who need around-the-clock care. Breastfeed Atlanta offers breastfeeding services and helps a local milk bank get screened breast milk to babies in the NICU, but their ultimate goal is to safely feed babies and help mamas regardless of the feeding method.

They have received an influx of mothers who want to donate breast milk to help those in need and are working with the pediatric community to evaluate potential donations.

In addition to working with moms of NICUs, they are providing much-needed resources and support for mothers who are struggling, answering questions about homemade formula (again, not recommended), or people who want to start breastfeeding again. “I have spoken to several mothers who want to re-lactate. We are happy to help them, but it is not a quick solution and the results of their efforts can be unreliable. So they have to find another option for the interim, and that usually means continuing with formula.”

Not just formula: other baby food is selling out

I talked to my son’s cystic fibrosis nutritionist when I first heard about the formula shortage.

The same feelings of hopelessness and worry that I had when I found out he had CF materialized rapidly; again, I was worried I would not be able to feed my son. She told me that she was in close contact with my feeding tube provider and that she would put in an extra order if she could.

She reiterated that if I ever had supply chain issues in general to talk to the medical team first before trying to take things into my own hands.

My issues are not just about my son’s extra-calorie formula, however. He has sensory issues with food and sometimes melts down when he doesn’t get the exact chicken puree he needs to swallow his enzymes (I know many parents who can relate!!!).

Baby food is also starting to be in short supply.

For parents looking to feed their babies, the recent recall has had a domino effect on other products as well. Just like with toilet paper in the early days of the pandemic, parents are rushing to stores, which leads to widespread shortages of formula and other baby foods. This also impacts other essential infant feeding products, like bottles, nipples, and even breast pumps.

With an already dwindling supply chain, we don’t know what the next few months will look like.

Thankfully, parents have been coming together to support each other in many ways, both big and small. From offering up their own milk supply to searching local stores and passing along information, to offering kind words to ease others’ anxiety, these acts of kindness go a long way in helping parents who are suffering because of this crisis.

When we feel alone and lost, it's these little moments of connection that remind us we're not alone. We are a part of a larger community, all fighting for the same thing: a better future for our children.




Shana Bull

Author



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