When I was thinking about the title of this post, I wasn’t sure the term, “special needs” fit the bill. My daughter was developmentally behind, but now she is thriving and a very smart girl! The term “special needs” doesn’t just mean that someone mentally requires assistance, it can also refer to medical assistance as well.
In the United States, special needs is a term used in clinical diagnostic and functional development to describe individuals who require assistance for disabilities that may be medical, mental, or psychological.”
My daughter, Elizabeth has a feeding tube and this is just part of what makes her so special! I decided to blog about this for two reasons. One, because it is Feeding Tube Awareness Week and I think more people need to learn about feeding tubes. Two, because I get asked questions all the time about Elizabeth’s feeding tube – why she has it, and why it hasn’t come out yet. If you are wondering any of these things or just want to know more, then this post is for you!
Why a Feeding Tube?
Elizabeth was born with severe GERD. She would projectile vomit and couldn’t keep much food in. This led to a diagnosis of “failure to thrive” and later aspiration (which means she was choking on her food).
Everything happened so very fast. Elizabeth was only two months old, nothing was working. We tried every medicine, every formula, everything the doctors could possibly think of. Finally, we went to see a Gastroenteronologist. He heard her whole story and immediately we were being told she needed to be hospitalized.
It was quite the whirlwind. More tests, an NJ tube (a tube that goes through the nose into the intestines), and finally home after a week. We weren’t even home a full 24 hours before Elizabeth ended up in the hospital again, this time we were told she would need surgery.
We had no idea what to do next, the doctors had done everything, we had done everything. I talked to my friend who had gone through similar issues with her son. He also had a feeding tube and had gone through the same surgery. She talked me through it all and what it would be like and if it was worth it. We also talked to our feeding therapist who we trusted. Then we researched.
Most of the above was done on the way to the hospital. We had a few more days where we waited and then we also talked to a surgeon about our options. Was this surgery really necessary? Did we do everything we could? The answer was yes, and we were told that with this surgery they would automatically put a feeding tube in her stomach. It would be two surgeries in one and it was so she could safely eat.
It was so so hard, but we decided this what was best for Elizabeth. We didn’t know how long she would have the feeding tube or even if she would need to still use it after surgery, but here we are a year later and she is still using it. Do we regret it? No. I believe it saved her life.
My Child has GERD/Failure to Thrive and Doesn’t Have a Feeding Tube…
The question I get asked most is why my daughter needed a feeding tube for reflux. “My child has reflux and doesn’t have a feeding tube. So why does your child?” I understand that a lot happened, so it’s hard for people to understand why she needed it. Here are the reasons why and the things that led to her getting a feeding tube:
- She was projectile vomiting.
- She was Failure to Thrive and not able to keep enough food in to gain weight.
- No formula changes worked.
- No medicines worked. We tried every single reflux medicine one on the market that a baby could safely have.
- She was aspirating. This is an important one and one that most people don’t get. Aspiration is serious. Every time she ate, she had food going into her lungs and she would choke. Every time she projectile vomited she would choke again thus – having more liquid going into her lungs. This means that her airway needed to be cleared of food, thus the need for a tube for eating.
- They tests they did showed severe GERD. It was literally eating away at her esophagus to the point that the tests showed huge sores on her throat from the reflux tearing at her.
- They tried an NJ tube (a temporary tube) before surgically putting in a permanent one. It didn’t work.
Every child is different. Just because one child has reflux does not mean it is severe as what Elizabeth had. Every child has different needs, and some children are Failure to Thrive, but don’t need a feeding tube. Some have other things they can do that work that did not work for Elizabeth. Every child is different.
Why Haven’t They Taken Out her Feeding Tube Yet?
It’s been a year now, and Elizabeth still has her feeding tube in. The problem is, weaning off a feeding tube is not easy. There are many many different aspects that go into it including making sure she is healthy enough to gain weight on her own without it.
Every child is different, but we still don’t have an overall diagnosis as to why she has all these problems. Elizabeth has already started to wean from the tube. She’s only about 10% weaned off, but it’s a start! We still have to check to see if she is still aspirating, and we need to make sure she can continue to gain weight without the tube feeds as she is weaned.
She is eating a lot of different types of foods, but we are working on getting her stomach larger so she can take in larger amounts of food. It’s going to take time, but once she can gain on her own without using the tube for about 3 months, then she can have it taken out!
If you would like learn more about Elizabeth, feeding tubes, or more, check out my post: What It’s Like to be Mom to a Tubie.