COTA for Eli's Battle

Our Story

My strong man has been through so much in such a short time. Elijah was born 4 days before his due date. Good weight and length presumably healthy. When babies are born, they usually do a simple blood test. One of the things they check for is the amount of bilirubin present in the child’s bloodstream. Elijah’s numbers came back normal at 12.3 but as the days went on it would only increase. It was already at 16.5 by two days old, which is way too high.

Elijah started his first two medications to try and combat the high bilirubin whose causes were unknown. It helped for a while but there was always the over-looming question. Why is this happening? We teamed up with Surgery who wanted to perform a HIDA scan to better diagnose him. The scan results showed Elijah’s bile ducts were not filtering out bile the way they should have. Elijah was lucky in the sense it was caught super early.

 This discovery led us to his diagnosis. Biliary atresia. which is a rare liver disease that occurs in roughly 1 out of 15,000 live births. Biliary atresia is where the bile ducts are scarred and blocked or severely damaged.

 Then only 2 days later my barely 2-month-old was taken into a 6+ hour operation called a Kasai procedure. Which is where they remove the blocked bile ducts and connect the liver to a piece of the small intestine. Elijah’s surgery went well. Our surgeon told us a couple of things that would amount to the success of the procedure. One of them being colored stool. Shortly after surgery, Eli had a dark green poop! A joyous moment for everyone on his team. Then we were told if he made it three months after the procedure relatively stable then more than likely he had a good chance to grow with his procedure. We were able to go home in only 3 days. He was resilient.

His GI followed his labs closely. His labs were stable but also all over the place. Elijah invented his version of normal. We were also sent for the occasional ultrasound to monitor the cirrhosis and growth of the liver. We were also instructed to head to the local emergency room for every fever over 101.3, his surgery came with the risk of infection at any time. That instruction led us to the hospital more times than I can count. For a while, Elijah thrived until his first case of cholangitis, which landed us in the hospital for 6 days hooked up to I.V. antibiotics.

We were then referred to hepatology. This doctor informed us he wouldn’t make it to 5 without a liver transplant.

The following two years went by in a blur. Elijah was learning to walk while also managing a severe liver disease. His first complication was fast. A surgical hernia that they did repair but only came back later. Then his body was incapable of absorbing nutrients. This needed a special multivitamin and to this day his body still struggles. Then his blood started clotting slowly. His spleen started to have to work harder due to his severely damaged liver Vitamin K was prescribed for this. Next came the fluid, out of nowhere my poor son’s scrotum blew up quite literally like a balloon causing him immense pain and discomfort. A diuretic was prescribed for that. This pretty much sealed the deal that Eli was going to need a transplant sooner rather than later.  Then it was brought to my realization my son hadn’t grown for almost an entire year. A special diet and pediasure were then recommended.

Currently, Elijah takes 5 medications daily. He gets his blood drawn about every week. Or at the request of his doctors. He is awaiting a transplant. He was approved last Thursday to receive his transplant and now must receive 4 vaccines to make his body stronger for transplant.

We also are running a Facebook page that closely follows Elijah’s story called Elijah Strong. please join we would love to have you along for the journey.

We also were lucky enough to be featured on our local news channel you can view that Here

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax-deductible to the fullest extent of the law.