Support Life Saving Surgery: Rare but Real

Hello! My name is Kelly and I was born with duodenal atresia, which is a rare congenital birth defect where the duodenum (the first part of the small intestine) is either partially or completely closed, preventing the normal passage of stomach contents into the intestines. I was born 2 months early and weighed just over 3 lbs at birth. I had surgery at just 2 hours old called a duodeno-duodenostomy. This surgery was necessary in order to save my life. After surgery, I remained in an incubator for 3 months at the hospital before I was able to go home for the first time.

I have always had belly issues, ranging from nausea, vomiting, bloating, chronic constipation, and extreme fatigue. It just became something that I dealt with. There were many times where I have turned down many foods, invites from friends, or left events early because I needed to lay down to deal with these symptoms.

Over the years, I have spent many, many nights sleeping next to the toilet on the bathroom floor.

Alcohol was never really a part of my life while everyone else was partying and enjoying their younger years. I had enough issues on my own, that adding alcohol was not something that I needed in my life.

I saw my pediatrician until well past the typical age range because he was the one doctor who knew my condition and medical history well. If I had known enough back then, I would have requested all of those records and set them aside for future doctors.

Anyways, it wasn't until about 4-5 years ago that everything seemed to just be getting worse. It got to the point where I was in pain every single time I ate food, which obviously is an everyday thing. Realizing the terrible feeling that was sure to come, but also knowing that I HAD to eat.

I have always gone to the doctors and had tests done, but none of them ever led anywhere. It was always chalked up to anxiety or acid reflux and sent home with recommendations for Miralax and other similar items. It got to the point where I couldn't keep up with the medical bills and just lost my faith in doctors as I kept going in circles. Again, I will admit that I was not aware that medical gaslighting was even a thing.

I try my best to write down all of my symptoms and issues to bring up at appointments, you know the ones you wait 8-10 months to get into and then they rush you through the 15 mins which is never enough time to discuss everything needed. In my experience, most of the medical field is strictly about rushing out the ‘patient’, billing insurance, and collecting that money. It got to the point where you are made to feel like such a burden and that nothing is wrong.

About 8 years or so ago, I FINALLY met with a new primary care, Dr. Fitzgerald. She was the breath of fresh air that I was so desperate for. Physical ailments absolutely have an impact on your mental health. She helped me out and listened intently when no one else would. She did not rush any of our time together and purposely had longer appointment times scheduled because she knew that I was a complex patient. She even wrote down a plan of action so that I could have my own copy and we could follow up. Things were starting to look up and there was hope; until I got the notice that she was moving to Florida. My heart was crushed (because I certainly wouldn't be able to continue seeing her or have the funds to go to Florida to get more answers).

Eventually, after establishing with a new primary care, about a year later the referral to a GI doctor was initiated. That was a few years ago. Over the past few years, I have had sooo many doctor's appointments, testing, labs, scans (X-rays, MRI, CT & Ultrasounds), various procedures, and medication trials. Slowly, new results would come to life and although they weren't great diagnoses, it was validating that I was right. That something was very wrong, and it just took the right doctor to be patient and push enough to find out what it was.

There are so many diagnoses that I haven't even collected on records but the most serious ones are the newest. Not only was I born with duodenal atresia, a rare congenital birth defect, affecting .01 - .02% of all births.

The next validating diagnosis was SMA Syndrome (Superior Mesenteric Artery Syndrome), a rare digestive condition where the duodenum (the first part of the small intestine) gets compressed between the aorta and the superior mesenteric artery, which are two major blood vessels in the abdomen.

I have always been a very skinny person, but the more weight lost, the worse the SMA syndrome can be. It was not something any doctors suggested as a possibility based on symptoms because it is extremely rare, affecting only .013 - .3 percent of the population. We are now at 2 rare conditions, but getting answers.

As more extensive testing was done before preparing for surgery, it was also found that I also have MALS (Median Arcuate Ligament Syndrome), a rare condition where the median arcuate ligament, a fibrous band of the diaphragm, compresses the celiac artery—a major blood vessel that supplies blood to the stomach, liver, and other abdominal organs.

3/3 for rare diagnoses.

Of course, I have many more that are being treated, but these will require a pretty major surgery. I will be having surgery that will undo the duodeno-duodenostomy done as a baby, then redoing it. In addition to rearranging some arteries, removing my gallbladder as bile was leaking where it shouldn't be, and working to fix the SMA syndrome. This is a big surgery. A big, necessary, and scary surgery. I am truly terrified, but hoping that this will help improve my quality of life.

My doctor has considered a feeding tube as my weight was already low. Because my digestive tract does not work as it should, I have been put on a 7-day liquid diet instead of the typical no eating 24 hours before surgery. The downside is that it means even more weight loss, leading to more spikes of pain. I keep telling myself this is only temporary and that there is hope in the future for a potentially more normal life of less pain and more living.

It is estimated that I will be in the hospital for a week minimum, potentially more depending on how it all goes. The recovery at home was estimated to be 5-6 weeks of no lifting more than 10 lbs and no driving during recovery, which severely impacts my ability to work.

I am terrified. And anxious. And scared. And oh so worried about the medical bill from such an extensive and multiple procedures within the same surgery. I am stressed that I won't be able to make enough while I am down and out to be able to keep up with bills. But this HAS to be done or it could be deadly.

I am not a person who is good at asking for help, but I am going out on a limb and swallowing my pride on this one. If you can help in any way, even $1, it will help the balance for the incoming medical bills to follow. As well as help me to cover my bills while I am unable to work. I will still sell what I can on the marketplace to supplement, but it's not going to be anything close to what I will need.

Thank you for taking the time to read my story. And if you are the praying kind, I could use all the prayers I can get.

God bless

Kelly