Mum, Kim Fullington Story
Date: Mon, Jun 11, 2018
It is my goal to support and assure you that there is light at the end of the tunnel. Without a doubt, it is a long, hard road but things do get better! Here’s my story:
In 1994 one of my twins was born with esophageal atresia and I truly had no idea how much it would change my life. The father of my babies was nowhere to be found when I gave birth, and I didn’t even know I was having twins until my pregnancy was more than halfway through, so I went through this alone…
My son was born with a long gap, isolated esophageal atresia. He spent the first four months in the NICU of a hospital that is located over an hour away from my home. I had never heard of EA before I had him, so I could not have possibly anticipated what he would need to go through! I really believed that he was born broken, the surgeon would fix him and we would be on our way… I was clearly clueless!
After four months of trying to lengthen his esophagus 3-4 times per day, they were finally ready to attempt the surgery to repair it. The surgery was not successful. It simply would not reach. In an effort to allow me to take my baby home, the surgeon pulled his esophagus through his neck to allow the saliva to drain and sent him home with his g-tube.
I was a single mom, so I needed to work to support my babies… let’s say that finding (and keeping) a babysitter when you have twins and one of them needs special care was a pretty big challenge of its own!
When my son was sent home, I was told that when he was at least one year old and weighed at least 20 lbs, they could attempt a second surgery. At four months old, my baby weighed only 4 1/2 lbs and was only getting 2 oz of formula every couple of hours! He was between 18 months and 2 years old before he was finally big enough to tolerate a second repair attempt…!
The second surgery to repair him was successful, but he was nearly 2 now, and had never eaten through his mouth before! I was now tasked with teaching my two-year-old to eat through his mouth! This is no longer a natural function for a two-year-old who has never done it before… During the surgery, they replaced his g-tube with a j-tube. The difference is that the j-tube was placed further down in his intestines and was only used for supplemental fluids. 3 days after we got home from this surgery, my son pulled his j-tube out! The surgeon said that he wouldn’t tolerate another surgery this soon to put a new one in, so he would simply need to get enough fluids on his own!
Two weeks later, he ended up in the hospital dehydrated and nearly died! After that, he didn’t want to drink ANY fluids on his own! For a solid year, the only way I could get him to drink even an ounce of fluid was to pin him down and use a dropper to squirt fluids in his mouth. It seemed cruel, but it was literally the only way he would get even an ounce of fluid. After about a year, he began drinking some on his own. Gradually his intake (without being forced) was enough and I no longer needed to worry…
Another thing I should mention about his repair was that it was a “gastric pull-up”. They literally rearranged his intestines to pull his stomach into his neck and attach it to his esophagus. They had limited options because his esophagus ended near the back of his throat, and there was only a “nub” coming up from his stomach to work with.
While my son was in the hospital having nearly died from dehydration from his surgery, I began noticing that when he ate, the area where they had attached the esophagus to the stomach would bulge. When it would bulge too much, he would cough up whatever he ate! I wondered what would happen if I put just a little pressure on it, so I worked up the courage to touch it when it was bulging… just a gentle touch was enough to send the food through the esophagus! Putting a little pressure on that area became a normal part of our feeding routine, and it was the only way to keep him from coughing back up what he ate. At four years old I began teaching him to manipulate this area of his neck on his own, and today at the age of 24, he still needs to do this!
Between the ages of 2 and 5, my son began having issues and needed dilatations weekly! Additionally, we were in the ER regularly having food that was lodged in his esophagus surgically removed! The list of foods he couldn’t eat kept growing and growing, to the point that it was difficult for him to get pudding down.
His doctors and surgeons agreed that he needed another surgery, but nobody in my area wanted to touch him, because they said that there was only one shot left to fix him. They said that if the surgery didn’t go well, he would never be able to eat through his mouth again! My son’s pediatrician finally referred us to a surgeon that was 2 1/2 hours away that also agreed that he needed surgery, didn’t want to touch him himself but told me about a surgeon who at the time was said to be the best in the world for EA repairs! This surgeon literally traveled around the world doing nothing but EA repairs.
I had to drive all the way to Michigan (over 10 hours away) to meet this surgeon and he agreed to do my son’s surgery. My son was five at the time. The surgery was successful, but this time we had issues with scar tissue that kept trying to close off the esophagus. When we got home, I ended up having to take him every-other-week for dilations (keep in mind that the nearest hospital that could deal with his condition was over an hour away, but we were now working with a surgeon that was 2 1/2 hours away!). From the ages of 5 to 10 years old, this was our life! I believed it would always be this difficult! My son could eat whatever he wanted, but he needed regular dilations to keep the scar tissue from restricting his intake!
At the age of 10, his regular surgeon was on vacation when a dilatation became necessary. I was very uncomfortable with the surgeon who met us in his place, who barely spoke English! This surgeon turned out to be truly God sent!! While my son was in the recovery room, he met with me and said that he decided to try something a little different. He went on to say that after the dilatation, he gave my son a shot of cortisone at the surgery site to see if it would help… my son is now 24 and since this dilation at the age of 10, he has not needed to see a surgeon and has had absolutely no issue with scar tissue or any issue getting food down!
After graduating from high school, My son had to jump through lots of hoops to get in, but he served as a Chemical, Biological, Radiological and Nuclear Specialist in the Army. He is currently a security guard and a licensed private investigator! To look at him today, you would never know that anything was ever wrong with him (except for all of his scars)!
There really is light at the end of the tunnel! Keep moving forward and you will eventually find it!