Having a Child Born Unable to Swallow

What you should find on this page are Parents that have set up FaceBook pages

to promote their Childs condition,

what this website is doing is to allow their stories to reach out to other Families.

If you have been where these Families are, or know of others in the same shoe’s,

this page aims to link Families who are looking after a very sick child.

I know this Feeling of hopelessness, having had a Child who at the time

was one of only 100 known in the world.

 

Gideon’s Story

Gideon, our youngest of 3 boys, was born on 11/11/2017 at 11:11 pm. This was definitely not planned. I gave birth to him completely natural, no medications even. We believe it is a sign from God. A few months before his due date we found out about his condition, long gap Esophageal Atresia. Basically, it means that his esophagus was not fully formed in utero. He has a little pouch that connects to his mouth and a small pouch that connects to his stomach but there is no connection in between.

When he was born we had 2 big teams in the delivery room with us. The NICU team and the surgery team. They examined him to make sure he was ok and to confirm his condition. They put a suction tube into his mouth to take care of his saliva since it couldn’t be swallowed. Other than that, he was in perfect health. He had a high bilirubin count and needed to be under the lights for a few weeks. At a few days old they put in a gastric tube to be able to feed him the breast milk I was pumping.

At 2 months old in mid-January they attempted reconstruction but at some point, after part 2 of his reconstruction a large hole formed on his trachea just above the split off into his lungs. He was transferred by air ambulance from Tampa General to John’s Hopkins All Children’s hospital where he was put onto an Ecmo bypass machine and they performed his life-saving surgery. This was January 28th.

What they did was they took his right latissmus muscle (a muscle on the back) with a piece of skin still attached to it, they cut off a piece of rib underneath his right arm and threaded the muscle with the skin attached through that new opening. They wrapped the muscle around both his esophagus and trachea then used that piece of skin as a patch to close up the hole in his trachea. It took 10 days to get him off ECMO and breathing on his own with oxygen support and a few weeks for him to recover from the surgery. His reconstruction came apart and his upper esophagus closed back up during this. The lower portion of esophagus did not close up. They had to put a GJ-tube in so that he could get off IV nutrition and finally get milk again. He gets continuous feeds now into his intestines.

During surgery to place the GJ-tube, they also gave him a plastic drain into the right side of his neck to try and drain his saliva, instead of having to use a suction tube, also known as a repogle, constantly draining his saliva from his upper pouch portion of his esophagus. It did not work and had to also be connected to a constant suction. This at least finally gave him the chance to finally start swallowing on his own, which he had never had to do.

Shortly after he started getting better. He was off all oxygen support and just when we thought he was out of the woods and heading home…. he crashed. Bad. He ended up with a bad case of pneumonia that kept coming back for 2 or 3 months straight. They told me they were going to attempt reconstruction again but it turned out that a fistula connection between his upper esophagus and trachea had formed due to the drain not working properly. This was why he kept getting sick. They could not have both surgeries done right next to each other all at one time so they had to fix the fistula first and allow him time for his lungs to heal before they finally did the reconstruction. He was 6 months old at this point.

During that surgery they also took out the plastic drain on his right side and on his left side they performed an esophagostomy. Now, anything he swallows come out the side of his neck. It’s also known as a spit fistula. There is no tubing, it is just his upper esophagus connected directly to the edge of his neck. Thank heavens this actually worked.

He was transferred to the Pediatric ICU because at that point he was way too big for the NICU. There in the PICU, he recovered from surgery and they got him off almost all medications and reduced his need for oxygen. He ended up on 1 liter of oxygen. It took 2 weeks to orchestrate his discharge because of all of the medical equipment, supplies, and nursing that had to be set up in order for him to come home. Finally after 215.5 days, 7 months, of being in the hospital, he came home. He was on oxygen support at home and had a nighttime nurse. He was also connected to a feeding machine for 18 hours per day. This was Mid June to early August.

He was home for about a month and he was thriving. He was getting stronger quickly and his older brothers were elated to finally have him home. Then suddenly, he started getting sick again. We were back and forth to the All Children’s Hospital emergency room a few times. Each time he would be admitted back to the PICU for a few days, then back home. Keep in mind that the hospital is an hour 15 minutes away. So, being back and forth so much is no simple thing.

On top of continuously catching the rhinovirus, his esophagostomy hole was closing up. They had to perform another surgery to cut off the scar tissue. He came back home one more time for about a week but now we had to dilate the hole twice a day. This is still being done months later so that the hole does not close up again.

A week later, in early August, he got sick yet again but this time the decision to keep him for good to start the process of stretching his lower esophagus so that it could be reattached. During the surgery, they found out that another fistula connection had formed between his stomach and his trachea. Luckily it was right where they were already planning to do surgery, so they were able to take care of it. A few days later, in early September, he started getting sick again. We had another big conference between all of his caregivers at the hospital and it was decided that they would perform a Tracheostomy.

Before the surgery, they did another bronchoscopy and took a bunch of pictures of the inside of his trachea. They also had done a CT scan. It turns out there was another hole in his trachea. After his big surgery back in January, a few of the stitches came undone. But, due to all of the scar tissue in his chest, the hole was not causing any issues. Air was not able to escape anywhere. This was, however, the reason for his breathing troubles. During the surgery on August 24th in his abdomen, they had to deflate his right lung. Due to of all of his surgeries on the right side of his body, he had a lot of scar tissue connecting his lung to his chest wall. When they deflated his lung, they removed the scar tissue. This awoke a hornet’s nest. The doctors call it a pouch. It really is a hole in his trachea though. He ended up with a lot of bacteria-filled fluid in that pouch area. They put a drainage tube in and we’re hoping that the hole would close up. It did not. In the meantime, they gave him the tracheostomy and they also started feeding him via G-tube directly into his stomach. Instead of bypassing it and feeding him via j-tube. The fluid completely drained and they were considering pulling the drainage tube out. Except he got sick again.

This was October 4th. It was bad enough that he ended up on the oscillator. Honestly, they thought he wasn’t going to make it overnight. But, God’s hand is on him. He’s a very strong boy, and he did make it. They did another test once he started to recover and found out that the bacteria in his trachea opened up a hole in his esophagus that they were stretching out. The end of his esophagus and the hole in his trachea were very close to each other. Milk and stomach acid was leaking into his trachea through those 2 holes. This was again the reason he had gotten so sick so quickly. They switched out the g-tube for another Gastric-Jejunal-tube and put both his drainage tube and the gastric portion of his tube onto suction to try and keep the stomach acid in control. They also put longer tubing through his tracheostomy to pass over the hole so that air was no longer leaking through it.

Currently, he is doing much better. He hasn’t gotten sick again since October 4th and they’ve been able to wean him down off of a few of his sedation and pain medications. Due to being on sedation for so long, he was on VERY high dosages. He goes through withdrawal, but they do everything they can to keep it minimal. But, he can’t stay like this. Johns Hopkins All Children’s here in St.Petersburg, Florida has suggested we transfer him to the Children’s Hospital in Boston for the doctors there to fix the hole in his trachea.

He was transferred to Boston children’s hospital on November 4th and they performed major surgery on the 8th. They did not have to put him back onto ECMO, but they did have to cut open his sternum, just like they would a heart surgery. The surgery was successful. They fixed the hole and they also took out the old skin that was used in the original patch. His tracheal wall has been healing itself! The little hairs inside of his trachea are growing back! They also sewed his lower esophagus back up so that he can start getting fed into his stomach again.
Boston also did an MRI of his brain. He did have a stroke at some point around the time the hole originally occurred and he has some damage to the distal area of his brain. His brain has also not grown. Mostly due to being on sedation for so long and not getting the stimulation a normal baby gets. He has, after all, spent most of his life laying in a hospital bed.
Doctor Smithers will be transferring down to Florida in March and he doesn’t plan to do anything else or have the other doctors do anything else, until then. For now, is it VERY important that Gideon comes home and does some major physical and neurological development first? He has a lot of catching up to do.

Gideon is back in Florida now and the case manager has already started the process of getting things in order for him to come home. He still needs to be off of a few medications first

My husband, Gideon’s father, is currently a few hours away at work up in the Florida panhandle where the hurricane hit. He will also be going to Nevada for training between December 2nd – 8th and the. Possibly going back to the panhandle until just before Christmas. I will be all alone with all 3 boys during that time.  Luckily thanks to some amazing people, I have all my Christmas shopping done already!

Gideon’s story is long from over. He still needs to have his original issue taken care of. His esophagus. But we are staying positive and believing that God has MAJOR plans for our warrior child.

Thank you for reading our story!

Love,

Cara, Justin, Genesis, Gabriel, and Gideon.

https://www.facebook.com/Roodbrood/

Minor update – 11/14/2018

Posted by Gideon – warrior boy on Wednesday, 14 November 2018