Today’s post is a guest blog written by Jodi Berndt. In honor of Feeding Tube Awareness week, Jodi shares her daughter, Allie’s story. We’d like to thank Jodi for taking the time to share her family’s story with us and raise awareness about feeding tubes.
At this very moment, many parents are facing the reality that their child may need a feeding tube. How do these parents know if a feeding tube is right for their child? Most parents know very little about feeding tubes or what they have to offer. Feeding Tube Awareness Week (which happens every February!) is to help raise awareness of enteral feeding as a positive and often life-saving medical intervention for those who are unable to eat and drink enough to sustain life, grow and thrive.
This is Allie Berndt’s story. Allie is a 2 ½ year old little girl who weighs 24.6 pounds and is 33 inches long. Her feeding tube saves her life every single day!
Allie was born full term in 2008 weighing in at 5 lbs 8 oz and 16.5 inches long. Shortly after birth, we noticed that Allie wasn’t drinking as much breast milk as a typical newborn, however we never imagined this was the beginning of her long medical mystery.
For 4 months, we tried breast milk and numerous formulas but Allie would not drink more than 2 oz at a time. Her Pediatrician started tracking her weight, height and head circumference. Allie continued to fall off the growth chart. When we introduced solid foods at 6 months old, we knew immediately that something was wrong because Allie would never eat more than a quarter of a jar of baby food. We met with numerous local pediatricians and nobody could figure out why Allie wouldn’t eat. Our family pediatrician finally referred us to the Children’s Hospital of Wisconsin (CHW) and we met with our first team of specialists when Allie was a year old.
At this point, no diagnosis and no progress had been made with her oral intake. Allie was shrinking by the day. The CHW feeding clinic evaluated Allie and immediately started running tests to figure out why she refused to eat. It was obvious that Allie had the ability to eat but she just was not interested in food.
We met with the CHW feeding team every other month for 8 months and at each appointment more tests were ran. All the tests were coming back normal so we were encouraged to enroll Allie in a 1 week outpatient intense feeding intervention and to start Allie on an appetite enhancer. We agreed, and in October of 2009 Allie started her feeding intervention and medication. Neither technique worked and Allie continued to avoid food at all costs.
Our little girl was slipping away from us. She was 20 months old and completely mute. She had gone from saying several words to not speaking at all. Her balance was awful due to major muscle deterioration. Allie’s brain had stopped developing properly and she was losing skills she had used weeks before. At this point the doctors had done nothing except mention that down the road Allie may require a feeding tube. We didn’t know anything about feeding tubes and what it could offer for Allie; however when our occupational therapist met us for the first time on December 8, 2009 and looked me straight in the eyes and said, “Allie looks awful. How come she doesn’t have a feeding tube for proper nutrition?” That’s the day I opened my eyes and decided I had to stand up for my little girl because nobody else was going to. We met with the CHW feeding team on December 9, 2009 and I spoke loud and clear stating we were not leaving this hospital until Allie had a feeding tube.
How do you know when the time is right for your child to receive a feeding tube? That is the million dollar question many parents are struggling to answer. Obviously every child is different so every parent has a different answer, however in our situation, I truly believe we and the CHW feeding team failed Allie because she should have had a feeding tube at least 8 months earlier. Allie’s brain didn’t have to start deteriorating; she didn’t have to lose her ability to speak or her ability to walk straight. If Allie would have had her feeding tube earlier in life, she probably wouldn’t have some of the struggles she has today.
In December 2010, Allie was diagnosed with a severe corn allergy (Type IV – delayed reaction) and gluten sensitivity. Due to her severe corn allergy, there are very few enteral feeding formulas out there that are safe for her.
She had a lot of vomiting problems before we found our best friend – Neocate Junior. Neocate Junior has been all of the doctors’ and dietitians’ #1 choice for Allie. We started Allie on Neocate Junior and a blenderized diet and we saw an improvement within 5 days. She is handling her feeds much better than before and her vomiting has stopped. We are also seeing a big difference in her behavior. Since Neocate Junior and our blenderized diet do not contain any corn protein or gluten, Allie’s chronic pain has diminished and she is feeling much better every day.
In addition to the Neocate Junior, Allie also consumes Neocate Splash orally. Neocate Splash is Allie’s first choice when it comes to an elemental formula. Neocate Splash comes in different flavors and Allie enjoys picking out a different flavor every day. Looking back, there are two things I wish we would have been informed about when starting Allie’s medical journey:
- The feeding tube is not a bad thing! It has saved our child’s life and continues to save her every day. For many children, a feeding tube is temporary and sometimes is only needed for a short period of time. If your child is not consuming enough orally to gain or even maintain weight, I highly recommend you talk to your doctor about a feeding tube. My one regret is not being proactive and requesting a tube for Allie as soon we knew she wasn’t able or willing to consume enough calories to thrive on her own.
- I wish we would have put Allie on the Neocate formula and a blenderized diet sooner. Allie struggled for a long time with vomiting and tolerance issues. Neocate Junior, Neocate Splash and a blenderized diet have worked wonderfully for our little girl and overall she is much happier. Allie is now growing and thriving like every little princess should. Thanks, Neocate for providing such wonderful products!
Allie’s refusal to eat remains a mystery but we are continuing to search for a diagnosis. Here is a video of our journey, which started on April 30, 2008.
During Feeding Tube Awareness Week, please take the time to share your story, or Allie’s, and help spread positive awareness of enteral feeding. Let’s inform everyone of this wonderful life-saving medical intervention that is helping so many children at this very moment. For more information on feeding tubes, please check the incredible Feeding Tube Awareness Foundation.
Last updated March 2018