‘How Am I Going to Feed Her?’ Parents of Premature Babies Struggle Amid Formula Shortage
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Cameron Stripling’s twin girls were born in February, 13 weeks before their due date, weighing a little over one pound each. Though one of her babies is still in a neonatal intensive care unit in Anchorage, Alaska — six hours from her home — Ms. Stripling, 27, considers herself “really, really lucky.”
So far, her daughters have avoided the major health complications that can pose a risk to extremely preterm infants, like brain bleeds or infections. And one of her babies was discharged in late May.
Yet despite her overall positivity, Ms. Stripling’s days are grueling and her thoughts are increasingly consumed by the ongoing nationwide baby formula shortage.
Ms. Stripling, her husband, their 4-year-old and one of the twins are living in a single bedroom at The Fisher House, a nonprofit that offers military families housing while a loved one receives medical care. Every day, Ms. Stripling and her husband trade off who visits the hospital. And every week, they drive from store to store, searching for Enfamil NeuroPro EnfaCare, the high-calorie formula their twins need to supplement breastfeeding.
When her daughter was discharged, the hospital was unable to send her home with any formula. And Ms. Stripling and her husband have only been able to track down a handful of cans at a Carrs grocery store, tucked away on a residential road. “Something is not right,” she said. “There is no way that we should be having this problem.”
As the formula crisis drags on, government officials are attempting to address the immense pressure that has been put on parents like Ms. Stripling, whose babies have specific dietary needs and who cannot simply buy whatever is on the shelves. The U.S. military has airlifted hypoallergenic baby formula from Europe. On Saturday Abbott Nutrition, the manufacturer that had to recall formula in February, announced its plant in Sturgis, Mich., had restarted production of its specialized EleCare formula. It should be released to consumers by June 20, and the manufacturer said it was “working hard” to restart production of other formulas as well.
But parents of preterm infants, like Ms. Stripling, have not yet felt the impact of those measures. And as those parents wait, the formula shortage is worsening what has already been a period of deep emotional turmoil for many. No new parent dreams of spending their child’s first days, weeks or months in the hospital, hovering over an incubator — and those who must are at greater risk for mental health complications, like postpartum depression and post-traumatic stress.
“It is already incredibly challenging to be a NICU parent,” said Dr. Vivien Yap, NICU medical director at the NewYork-Presbyterian Alexandra Cohen Hospital for Women and Newborns. “This formula shortage is likely exacerbating the stress.”
Of course, breast milk is the preferred form of nutrition for all babies, Dr. Yap said, and can be particularly beneficial for preterm infants, helping them fight infection.
But many parents cannot or do not breastfeed. And it can be especially difficult to breastfeed if you are a mother who is admitted to the hospital with your own medical complications while your baby is in the NICU, or if your preterm infant cannot yet suck or swallow and has to be fed through a tube, explained Dr. Rashmin Savani, chief of neonatal-perinatal medicine at UT Southwestern Medical Center in Texas.
“Almost all preterm infants — especially those less than 35 weeks’ gestation at birth — require specialized formulas or supplemented breast milk for appropriate growth and development, particularly for long-term bone growth,” Dr. Savani said.
Many of those babies come home from the hospital still needing to be fed a specialized formula, and the ongoing shortage exacerbates how difficult that time of change can be for families still trying to find their footing.
“They have to transition from a technology-rich environment with multiple staff looking after their baby to a home environment without this level of scrutiny,” Dr. Savani said. NICU families must travel to and from numerous follow-up appointments, and many have to learn to manage with home medical devices, like feeding tubes — all while they are sleep deprived and adjusting to the rhythms of life with a new baby, he added.
And now, parents have the added fear of depriving a vulnerable child of necessary nutrition — which they know could impact their growth and development, he said.
For moms like Anna Grymes, 38, the weight of it all feels relentless.
“You’re trying to bond with your baby and do all of the things that mothers feel pressure to do in the beginning. You are sleep deprived. Your hormones are racing through your body. And now you have this fear of: ‘How am I going to feed her?’” said Ms. Grymes, who gave birth in March at 35 weeks gestation. She now spends hours every day pumping milk and scouring store shelves for the specialized formula her daughter drinks.
None of this — not the NICU stay, not packing her baby up and racing to whatever store she hears just got a formula shipment in — is what she had in mind before she gave birth. Ms. Grymes, who is a single parent and works full-time, is tired. One day, she drove to five separate stores near her home in Jacksonville, Fla., and came up empty-handed — worrying all the while that she may have exposed her baby to the coronavirus while simply trying to track down her food.
Other mothers, like Shaquesha George, 33, have simply given up on finding specialized formula for the time being. Her baby was born seven weeks early and has a cow’s milk allergy that causes upset stomach. Ms. George adores her daughter and adores motherhood, but her first few months as a parent have been punctuated by moments of profound stress — like in February when she heard about the baby formula recall and realized her daughter was drinking from an affected can of Similac Alimentum.
“I completely freaked out,” said Ms. George, who rushed her daughter to the hospital near her home in Louisville, Ky.
Months later, despite diligent efforts, she has been unable to consistently find Enfamil Nutrimagen, the hypoallergenic formula their pediatrician recommended. So she gives her daughter a cow’s milk-based option. The pediatrician said it is fine for now, but after all that her baby has been through in her first months, Ms. George hates to watch her squirm in pain as she tries to process the dairy.
“As a mom, you want to make sure your child is able to eat. It’s hard when it’s really out of your hands as far as getting formula,” Ms. George said. “It’s very emotionally draining.”
In the absence of meaningful support, or a clear sense of when this will all end, parents have done what they can, establishing formula exchanges and local online groups that help them swap and locate cans.
Experts say that parents should also lean heavily on their children’s pediatricians. But sometimes, pediatric practices aren’t able to come up with extra supplies either. There have been reports of families who have run out of formula heading to the emergency room for help. Fortunately, Dr. Yap offered reassurance that “hospital supply is not in jeopardy at this time.”
But as specialized formula remains scarce on store shelves and online, some frustrated parents are turning to measures they never anticipated.
Mary Chappell, 19, gave birth to her daughter at 33 weeks, and has been unable to find the specialized formula she was prescribed anywhere near her home in Joplin, Mo. She has driven two hours in either direction — to Branson and Kansas City — but “we weren’t able to find anything anywhere,” Ms. Chappell said.
Instead, she has had to give her baby a combination of a standard formula that left her with a cracked and bleeding face rash, and about 200 ounces of donated breast milk from a mother on an informal sharing site.
The American Academy of Pediatrics and the Food and Drug Administration advise against informal milk swaps because of the potential risk for introducing babies’ systems to bacteria, drugs or even life-threatening infections, like H.I.V.
But Ms. Chappell — who has broken down in tears in grocery stores multiple times — does not see what other choice she has. Her baby, who has already been through so much, must eat.
“It feels like a never-ending battle,” she said. “She was in the NICU for 26 days, and that was really scary. Now there’s the formula shortage, and it’s terrifying.”