COTA for Jaime's Second Chance

Our Story

Jaime was born on February 6, 2026. He’s our second child behind our 2.5 year old, Jonah. Jaime was almost 2 lbs smaller than Jonah when he was born, 6lbs 7oz. I just chalked it up to his 2-vessel cord causing some growth restriction. His birth was uncomplicated by planned c-section. He was jaundiced at birth, but his levels were only slightly elevated and he didn’t even need light therapy. At our 1-month check-up he was still a little jaundiced, but it looked like it had gotten better so we didn’t check his levels. Over the next few weeks his jaundice continued and got slightly worse. At his 2-month check-up, his doctor was very concerned that the jaundice had not cleared and we did blood work that day. His bilirubin levels were very high.

We were sent to Riley Children’s Hospital that day to be evaluated for biliary atresia, which was the ultimate diagnosis.

Normally, the liver produces bile that is drained through the biliary ducts and gallbladder and into the intestines. In biliary atresia, the bile ducts and gallbladder essentially close off, scarring over into fibrous bands, and the bile is not able to drain. As the bile backs up in the liver it causes liver damage over time leading to other complications such as cirrhosis, portal hypertension, and ultimately liver failure – which is just a really ugly disease process, especially for a baby. He struggles to gain weight due to his inability to absorb fats and needs to be on a special formula. As his spleen and liver enlarge and his abdomen takes on fluid, he will likely need to be fed by NG tube. All of this will eventually lead to the need for a lifesaving liver transplant.

While we were at the Riley for the initial diagnosis, he underwent the Kasai procedure which directly connects the liver to the intestine in an effort to drain the liver of bile. He was also found to have other anomalies including polysplenia and malrotation of the intestines. He underwent an additional LADD procedure to correct the malrotation. We were in the hospital for a week as he recovered.

The Kasai procedure is not a cure and is only successful long term in 1/3 of cases. Typically, they give it 3 months to determine how well the Kasai is working. At this point in time, Jaime’s bilirubin levels have remained elevated and we are anticipating the need for a liver transplant before the end of 2026. We will be going through the process of transplant evaluation this summer.

To be eligible for a transplant, we have to wait and allow the liver disease to progress as we do everything we can help him gain weight. He is on multiple medications, including bile salts, a prophylactic antibiotic, and multiple vitamins, which he struggles to absorb. The antibiotics are used to try and prevent cholangitis, which is an infection that comes from the intestines into the liver as a result of the Kasai. So far, we have already been hospitalized a second time 2 weeks after his Kasai as a result.

It has been a tough road so far with more struggles ahead. Riley is 1.5 hours from home, so when he is hospitalized we are staying in Indy, sleeping in the hospital room or taking turns at a hotel, paying for food, and painfully missing time with our toddler Jonah.

We are hopeful to one day be passed this immediate hurtle with a healthy, growing boy, but as a transplanted child, Jaime will need special care for life. Unfortunately, because he will likely need a liver transplant so early in life, there is the increased possibility he will need a second liver transplant down the road. With this challenge ahead of us, we have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. We are asking for the support of COTA by our family, friends, and community to help provide Jaime all the transplant-related care he needs now, and in the future. Every donation to COTA for Jaime’s Second Chance will go towards transplant-related expenses now and going forward. We deeply appreciate everyone who has rallied around us on this journey with their time, energy, financial support of COTA, and prayers. Every bit helps Jaime get a second chance as he fights through this battle against biliary atresia. Thank you from the bottom of our hearts.

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.