Noelle’s story: The danger of one bite

Noelle Dilley

Noelle Dilley knew the moment she bit into what looked like a chocolate cupcake it was contaminated. Tears streamed down her face as she ran to her mom.

The cupcake had peanut butter in it. Noelle, 10, is severely allergic to peanuts.

She and her family were at a church picnic. The cupcake looked tempting. It would be for most 10-year-old kids. Who would have thought it contained the one ingredient Noelle can’t have.

Noelle was tested and diagnosed with a peanut allergy – among other allergies – when she was around 3 years old after suffering a reaction to a small amount of peanut butter, said her mom, Renae Zaeska. The Atwater, Minn., family was told that with every peanut exposure, the reaction would be worse than the previous one for Noelle.

When Noelle was 5, one bite of a Butterfinger turned into a helicopter ride and a five-day stay at St. Cloud Hospital.

This reaction would be worse, Zaeska thought.

Noelle’s mouth started to burn. He ears ached. Her stomach hurt. On this day – of all days – Zaeska didn’t have Noelle’s EpiPen.

She grabbed Noelle and sped to the emergency room at Meeker Memorial Hospital in Litchfield, Minn. By the time they got there, Noelle’s eyes had started to swell and she began to wheeze. The medical team used an EpiPen and steroids. But Noelle needed additional care.

For the second time in her life, she traveled in a helicopter. She was taken to Children’s Hospitals and Clinics of Minnesota where she spent 31 harrowing days.

At Children’s, Noelle went into cardiac arrest and CPR was performed. Her heart started pumping again, but her lungs were so inflamed and full of mucous she was unable to use them. She was ultimately put on ECMO (extracorporeal membrane oxygenation), a technique that provides cardiac and lung support to patients whose heart and lungs are severely distressed.

She underwent surgery, endured numerous procedures including bronchoscopy and was tested time and time again as she recovered.

“After this whole accident, I’m terrified…I pray to God that we never have to go through this again,” Zaeska said. “I wish I could put a bubble around her.”

“For four minutes, she was gone,” she said.

Now, Noelle and her family – who were able to stay at the Ronald McDonald House inside Children’s during the hospitalization– are home, where they belong.

“In the PICU at Children’s, we all have been privileged to care for Noelle and adore her family.  To see her so desperately ill, knowing that her heart and lungs stopped working, to help rescue her from her critical illness, then to see her walk out of this hospital is indescribable. This is exactly why we embrace caring for children,” said Dr. Ken Maslonka, PICU medical director.

The fifth-grader has been home since Sept. 19. She’s working with a tutor at home and continuing physical, occupational and speech therapy before returning to school for half-days.

Noelle’s school has taken various precautions to help protect her and students with food allergies, Zaeska said.

School staff has eliminated peanuts and peanut products in the food served to children, Zaeska said. They’ve created a peanut-free zone for Noelle at lunch. They’ve also added a wash basin where kids can wash their hands before entering the classroom.

The school can’t limit what parents send with their kids, however, Zaeska said.

Noelle’s parents read labels, know which companies use peanuts in food process, and check out which restaurants are “safe” and take steps to prevent cross-contamination.

Their days of dining outside the home will be fewer since Noelle’s hospitalization.

“We’ve told Noelle that we won’t eat out like we used to,” Zaeska said.

According to the Food Allergy and Anaphylaxis Network (FAAN), nearly 6 million or 8 percent of children have food allergies. Peanuts are a top food allergen.

“The best advice for families with severe food allergies is: know to the best of your ability what your child is allergic to, always be prepared for an acute allergic reaction every moment of every day, do your best to keep your child in a safe environment away from the offending allergens at home, school, restaurants,” Maslonka said.

You can read more about Noelle on CaringBridge.

 

6 thoughts on “Noelle’s story: The danger of one bite

  1. Kathy

    Thank you so much for sharing Noelle’s story. I work with child care providers and parents of young children and hear so many who think the restrictions on peanuts are an over-reaction to overly dramatic or protective parents and insist that their child’s “right” to eat peanut products is just as important. As I said in a tweet that I just sent out, Noelle’s story should clear up those misconceptions! I’m so glad that Noelle survived her latest crisis but I’m also glad that her family was willing to share their experience so that others can understand the magnitude of the risk for children with food allergies like hers.

  2. dionne

    I am allergic to black pepper i cant go to restaurants or family get togethers without them knowing to remember not to add it. makes it hard to accept invites for just one person to change the reciepe

  3. CAROLE JENNINGS

    If no one has suggested this or brought this to your attention, I’d like to now. Please consider getting your child a service dog that can alert to the presence of any certain item!! They are life savers for so many. Can Do Canines in Hopkins has a wonderful organization. Dogs are free!!!! Please check out any of the wonderful service dog organizations. I can’t imagine living life constantly afraid of coming in contact with something so common that can kill you!! Good luck to you all. Sincerely, Carole

  4. Molly Conley

    As a parent with a son with severe peanut/tree nut allergies, this story brought tears to my eyes. He’s only been hospitalized once, and only because it was his first reaction. I’ve had people tell me, after I say he can’t eat something, “One bite won’t hurt him.” To this I reply, “No, but it may kill him.” The ignorance of people in regards to food allergies, or any allergies for that matter, boggles my mine. I am going to share this story because if it touches only 1 person, teaches only 1 person, then hopefully it’s done its job. My thoughts are with Noelle and her family and I hope they never have to experience anything like this again! (Nor should any family!!)

  5. Melissa VanZee

    I’m in noelles homeroom class and she’s so nice and kind to everyone and makes everybody smile and giggle! To see her face everyday just makes me happy to know she’s here with us now. I’ve known her since kindergarten, we were in the same class then in first grade she moved away and came back in third grade, when she was in my class again! She makes me happy everyday seeing the smile on her face ill sit and talk and laugh with her about chili bowl (tennis)! We got lucky that day!!!! So please help this family and wish the best to noelle and others with a serious allergy.

  6. Melissa VanZee

    And tonight she was on the news singing and helaving a good time showing us her justin bieber pillow and posters and going through her book about her journey at children’s

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