For What to Expect's "Mom Heroes" series, parents who have gone to great lengths to help others share their inspirational stories.
By Ashley Haugen, as told to Sarah Bruning
When my older daughter, Abigail, asked for water beads for her sixth birthday, my husband, Jonathan, and I didn't think much about it. She'd seen the colorful toys in a YouTube video that had babies crawling around in them, kids tossing them in the air and parents filling tubs with them for sensory play. The beads start out tiny — like the size of a pinhead — but they grow to several centimeters wide when they're soaked in water. Hundreds of them come in a bag, so our main hesitation was that they'd be messy.
We hopped online to see what we could find out. Everywhere we looked, these beads were marketed as nontoxic, biodegradable and eco-friendly. We went ahead and ordered a set promoted as "Amazon's Choice."
If I had known how dangerous these beads can be, I would have never brought them into our home. Our younger daughter, Kipley, went to the hospital and suffered long-lasting effects after swallowing some of the beads. Now, it's my mission to get water beads banned and keep other families from having to go through the same experience we did.
We did everything possible to keep our girls safe, but somehow, Kipley must've gotten ahold of the water beads
Once the water beads arrived, we were ultra-careful. Abigail never played with them unsupervised, and when they weren't being used, they were kept sealed in a storage container that only Jonathan and I could reach. Kipley, who was 10 months old at the time, wasn't allowed anywhere near them.
But after about a week of them being in our house, Kipley developed a rash around her mouth. When a dermatologist saw it, he thought it looked like an average case of dermatitis, so he prescribed a cream and told us not to use harsh soaps.
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Over the next several weeks, we noticed Kipley starting to get more and more fussy. She'd wake up crying and screaming when she'd previously slept through the night. It got so bad that Jonathan and I started having to care for the girls in shifts.
About three months later, Kipley's health took a turn for the worse. During one of her crying jags, I brought her into bed with me and encouraged her to drink a little milk, but she projectile vomited. Her head kind of bobbed back, and her eyes rolled a little bit before she slumped over.
The next day, she couldn't keep anything down, so we decided to take her to the emergency room, if for no other reason than to get rehydrated. They gave her multiple doses of an anti-nausea medication, but it did nothing. She kept throwing up. The ER doctor refused to send us home until he could figure out what was going on, and I'm convinced that decision saved Kipley's life.
As we were waiting to be seen by a specialist, I tried to lift Kipley's spirits by tickling and gently poking her since she's always liked that kind of playful stuff. That's when I noticed her abdomen felt bouncy and tight.
A resident came in to take a closer look, and when she listened to Kipley's belly, she didn't hear anything. I asked if that was normal, and she told me, "Absolutely not — the bowels should be super noisy." Then, she ran out of the room without another word.
Next thing I know, in comes a pediatric surgeon, who said that he wasn't sure what was wrong exactly, but if we didn't do emergency exploratory surgery, Kipley wasn't going to make it. I told him I could handle anything except losing her.
The wait was agonizing. When the doctor came in to give us an update, he showed me a picture of colorful pieces of material inside her bowel. I immediately recognized what they were: remnants of water beads.
Kipley quickly started to improve, until she started showing new weird symptoms
Kipley stayed in the hospital for a little under a week, and the rash around her mouth started to heal. She started sleeping better and eating again. So at that point, her doctors thought we were in the clear.
But then a few weeks later, we noticed Kipley was starting to lose skills. She'd been building vocabulary and saying words like "mama," "dada" and "dog," but all of that was suddenly gone. Instead of asking for things with the baby sign language she'd learned, she'd just cycle through all of the signs, as if she didn't know what any of them meant. She also started becoming floppy and uncoordinated, and she didn't want to play.
I could tell that something was really, really wrong.
After many appointments and consultations, a developmental pediatrician diagnosed Kipley with toxic encephalopathy, which is a change in brain function as a result of exposure to a poison or toxin.[1] Her symptoms pointed to acrylamide poisoning, specifically.[2]
I dove into researching water beads and learned that they're made using acrylamide, a chemical compound that can act as a neurotoxin. As it turns out, there's no set limit on the amount of residual acrylamide allowed in toys. Manufacturers aren't supposed to have carcinogens or neurotoxins in their products, but standard tests don't look for every chemical out there on the market.
Our family's journey inspired me to push for change
The more I dug into water beads and their risks, the more loopholes I found in the consumer safety regulations in our country. Nontoxic, eco-friendly and biodegradable are not regulated terms; any brand can put them on their product. The water beads we got also didn't have a choking hazard warning on them.
When Kipley was 3 or 4 and had finally started talking again, there was a moment that inspired me to turn these frustrations into full-time advocacy work. We were in a store when her happy, smiley demeanor suddenly changed. I followed Kipley's line of sight and spotted a mom — water beads in hand and her small child seated in the cart.
When I turned back toward Kipley, she just said, "Friends safe." I immediately knew what she wanted and walked over to them to share our experience. Kipley looked so relieved when the mom put the water beads back on the shelf.
I started sharing Kipley's story more on social media, which led me to work with other families who'd been through similar things. A lawyer friend encouraged me to start my nonprofit, That Water Bead Lady, to have a more official way of connecting with people and sharing our story.
One day, a bunch of my TikTok followers tagged me in a video of a mom named Folichia Mitchell asking people to pray for her 10-month-old daughter, Kennedy, who was on a ventilator after swallowing a single water bead. The baby ended up staying in the hospital for over a month and went into septic shock.
When I saw their story, I immediately started trying to figure out how to connect with her so I could share everything I'd learned. My followers eventually found her number on a lost dog poster from years before.
When I reached her and explained who I was, she started crying. There was this instant connection because we innately understood what we'd both gone through. And we're among the lucky parents whose kids survived. The more stories I heard, the more determined I became to put a stop to these kinds of injuries once and for all.
I want water beads banned, but that's just the start
Going through this experience with Kipley, I realized that there are some big gaps in consumer protections.
The Consumer Product Safety Commission (CPSC) is the regulatory agency tasked with protecting people from harmful products. It relies on data from about 100 hospitals across the country plus voluntary reporting from companies, doctors and consumers to estimate product-related injuries and deaths.[3] Knowing this, I'd like mandatory reporting on product injuries from doctors to become the standard of care; that way, the CPSC could identify dangerous products faster. I also wish the CPSC could pull unsafe products from shelves more easily, even when a company fights a mandatory recall. Most importantly, I want the CPSC to ban water beads altogether, like it did with lawn darts and crib bumpers.
Since change starts with greater awareness, I decided to publish a case study about what happened to Kipley. A few years ago, I connected with Elizabeth Friedman, M.D., M.P.H., who heads up one of the regional pediatric environmental health specialty units across the United States. We, along with Irina Duff, a post-doctoral candidate in the neurosurgery department at Johns Hopkins University, wrote a case study about Kipley's experience for Pediatrics, a well-respected health journal.[4]
It's not typical for a parent to help write a medical case study, but Elizabeth and Irina insisted because I had done so much research. My involvement ended up being a really good thing because it sends the message that parents can be partners with health care providers.
My hope is that physicians will read it and become better equipped to spot and treat cases that arise, because until water beads are banned, any family is at risk for injuries.
At the end of the day, I'm not going to stop fighting to get water beads out of the market entirely. Kipley has improved so much in the years following her injury, and I'm so proud of how hard she's worked to make progress. But she still gets speech therapy a few times a week and is in a special education program in school.
I don't know what her life will look like as she continues to grow up, but I feel so fortunate that she's still here. One of the best pieces of advice I got from one of her doctors was just to take her home and love her because we can't know what the future holds. That's what we did — and what we'll continue to do.
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