Walking into the Peyton Manning Children’s Hospital, I wasn’t quite sure what to expect. Just getting some text messages from my mom explaining what was happening to my 2-½ year old nephew, Hunter, wasn’t enough. I didn’t fully understand why he was having a G-Tube put into his stomach, and why it had been such a hard week for his parents; my sister-in-law, Kris, and my brother, Jonathan. But still, I wanted to see them and be supportive in any way I could.
Going up to the second floor and approaching my mom and brother, I saw that they were having to push Hunter around in a stroller – calming him down from a huge meltdown. After saying hi to them, I walked into the room and found Kris, wiping away tears. I gave her a hug and she put on a brave smile for me.
“She hasn’t let herself cry all week,” my mom told me. “Tonight was the first time she cried.”
That’s when it really hit me how hard of a situation all of this was and how much my brother and sister-in-law are dealing with.
What’s a G-Tube?
A gastrostomy tube is inserted through the abdomen and delivers nutrition directly to the stomach. Doctors have this inserted in children who have trouble eating so they are getting the necessary calories and fluids in order to grow.
According to an article on kidshealth.org, common conditions that might require a child to have a G-Tube inserted into their stomach include:
- Congenital (present from birth) abnormalities of the mouth, esophagus, stomach, or intestines
- Sucking and swallowing disorders, which are often related to prematurity, brain injury, developmental delay, or certain neuromuscular conditions, like severe cerebral palsy
- Failure to thrive, which is a general diagnosis that refers to a child’s inability to gain weight and grow appropriately
- Extreme difficulty taking medicines
In most cases, this is a common procedure that only takes about 30 to 45 minutes, and complications are minor.
Unfortunately, this was not the case for Hunter.
The First Signs
Ever since Hunter was a few months old, he couldn’t handle a lot of formula. Kris remembers at one point that because Hunter was throwing up so much formula, he was drinking about 50 ounces per day – the average should be about 24-25 ounces. Hunter had to double his intake just to maintain his weight because he was having so much reflux. When he was three months old, Kris and Jonathan had to take Hunter in to get tests done.
“He was never really interested in baby food,” Kris said. “I don’t think he actually ate it until he was almost [one year old] and that point we switched him to regular food… We could never get him to eat a whole lot.”
Hunter was only eating at the most a few times a week, sometimes not eating at all. His parents had to start supplementing with Pediasure, but he started to lose one pound per week. At one point they had to take him to the hospital for IV fluids, and after a year and a half, he had only gained eight pounds. While being in the 40th-50th percentile for his weight, which was 28 pounds, it was a concern because he wasn’t growing nor was he getting enough nutrition.
Time for Surgery
About four months ago, when Hunter was a little over two years old, he stopped taking food altogether. He would only eat one meal every couple of weeks, and that would only be a little amount such as one or two bites of chicken.
“Slowly, he just stopped chewing, he wasn’t interested in any of his favorite snacks,” said Kris. “His favorite thing was M&M’s… But he would just put them in his mouth and spit them out. He refused to chew anything and wasn’t eating any solids.”
While already in the works of getting the surgery for a G-Tube insertion, his problems only got worse. Hunter stopped drinking Pediasure and developed Aspiration Pneumonia twice – anything he was eating or drinking, instead of it going to his esophagus, it was going into his lungs. His issues were becoming life threatening, and after Kris and Jonathan took him to the emergency room for dehydration, it was then when the doctors put a NG-Tube right then and there. It wasn’t until later when Hunter was given the actual G-Tube.
Jonathan and Kris with Hunter at Peyton Manning Children’s Hospital.
Along with getting a NG-Tube, Hunter also had a procedure done called a Nissen, where the doctors wrapped a part of the upper intestine around the stomach and stapled it together so it makes the hole from the esophagus to the stomach half of its size. This makes it almost impossible for him to throw up. Hunter was throwing up several times a day, causing him to develop Esophagitis – the lining of his esophagus was damaged – making this procedure very necessary as well.
Why is This Happening?
Hunter was first diagnosed with autism at 12 months of age, and it was reconfirmed when he turned two last November. This has led to him to have gastrointestinal problems. According to Medical Daily’s website, a study done at Emory University School of Medicine and Marcus Autism Center revealed that “autistic children are four times more likely to suffer from gastrointestinal difficulties, compared to children unaffected by social, communication, and behavioral challenges.”
“I’m not even sure how much a regular two year old would understand,” Kris reflected on how hard this process has been for Hunter due to lack of communication. “We have not had one conversation about it. He doesn’t understand why he was in the hospital … or what this tube is.”
Researchers at the California Institute of Technology have shown for the first time that gut bacteria found in individuals with autism may contribute to the disorder, according to an article on Ozy’s website.
While this whole situation has been a difficult one for Jonathan and Kris, it is not an abnormal situation for a child diagnosed with autism.
Hunter also has a genetic duplication. Kris said that while it doesn’t mean he is the only person in the world who has this, his specific genetic duplication is the first one documented. There is no information on this, and they are figuring out more and more about it as he gets older, such as this being connected to his gastro and congenital heart issues, as well as his autism.
After the Surgery
There can be complications after a G-Tube surgery, and according to UptoDate.com, these complications are usually minor. But, sadly, Hunter’s complications were anything but minor.
When he received the surgery for the G-Tube, Hunter had to stay in the hospital for one week. Because of his dehydration, he had to receive a bolus to hydrate him. After receiving three boluses, there was no output, scaring his parents because this meant he had severe dehydration. This led to Hunter having an emergency NJ tube through the nose and into the intestines.
“Seeing him taped with this thing taped to his face [with no sedation]… Just standing there and seeing 15 nurses holding him down … it was hard,” Kris said, remembering the difficult moment in the hospital last February. “It makes you realize that things are a lot more serious than you could ever hope that they would be.”
He ended up being switched to the G-Tube, connected to his stomach for food and medicine. Sadly, things would get worse before getting better.
Hunter had an emergency NJ tube inserted in his nose that went into his intestines.
Hunter stopped tolerating his feed, because of having gastro paresis – which prohibits him from following the traditional digestive process. This means his colon doesn’t empty, meaning his stomach isn’t emptying either. This led to him retching, since he cannot throw up due to his Nissen procedure. His retching and dry heaving was so bad that he would pass out.
Now, Hunter is on a GJ Tube – meaning that the tube is going to his stomach and then into the intestines to the jejunum. Food is going into his jejunum and medicine is going into his stomach. This also means that no food is going to his stomach or mouth.
Having a button sticking out of his stomach is hard for him, it’s made him pull on it many times which created a larger hole than what was supposed to be there. Because of the bigger hole, stomach acid was leaking out and it broke down all of the tissue around his belly, not having any skin there for a while.
“That was really painful for him, but then that added on a whole new process of taking care of it,” Kris said. “Cleaning it, medicating it, bandaging it.
When Hunter had tubes inserted, he had to stay in the hospital for one week.
“Trying to hold down any child that’s two, let alone a child with autism, for that long to try to take care of … that was horrific. Initially, it took us over two hours just to get him dressed every day. So it definitely has consumed our lives.”
Another struggle Jonathan and Kris have had to deal with was getting “unofficially” kicked out of Hunter’s therapy school, because the workers don’t feel comfortable working with his tubes.
Although the majority of Hunter’s life has been difficult with multiple hospital visits and surgeries, his parents still like to think positively.
“You’d do anything for your kids. Especially someone like Hunter,” said Kris. “If I can go to bed every night knowing that he got enough nutrients for the day, he didn’t throw up, and he didn’t aspirate, then I feel good about the day.”
Walker is almost 8 months old; Kris thinks of him as her “best friend.”
Someone who has helped Kris through this whole ordeal is her younger baby boy, my little nephew, Walker. Even though he is around eight months old, he has been able to be a light in Kris and Jonathan’s life during all of this.
“Obviously he doesn’t know, but it’s like he knows,” Kris said as she described how during Hunter’s 2-hour meltdowns Walker stays calm and doesn’t “make a peep.”
“You just look at him and he smiles … you just feel better. He’s just something to look forward to.”
“One positive thing about him being autistic is that he doesn’t process this all the same. He still can be really happy even though all of this is happening.”
While things are better now than they were three months ago, Kris believes this isn’t the end of the road for them. Since Hunter appears to have severe autism, there will most likely still be hard times in the future.
“Unfortunately I feel like this is just the beginning,” said Kris. “We were fortunate to discover a lot of this stuff with Hunter being so young but in that the older he gets, the more that happens.
“Hopefully it just gets better, but we’re ready if it doesn’t.”
*Photos provided by Kris Carpenter, Jan Carpenter.