COTA for Kaden's Battle

Our Story

On January 23rd, 2021, our family was eternally grateful to welcome our second child, Kaden Ryder, into the world. I was induced at 40+1 weeks at the recommendations from the doctors. It was a stressful birth; after spending hours in the hospital and possibly having to get an emergency C-section due to Kaden being low on oxygen, I gave birth to the strongest and most loving baby we could ever ask for.

In the week following Kaden’s birth, we noticed signs of jaundice – a yellowing of the skin and eyes due to a buildup of bilirubin in the blood; it’s normal in healthy newborns and usually clears on its own. But it is not normal in babies almost 3 weeks old. This was confirmed on February 12th, 2021, when Kaden’s blood test showed high levels of bilirubin, and he was subsequently admitted into the hospital. Kaden went through extensive blood work tests, ultrasounds, and was treated with antibiotics (for a UTI he had). The longer he stayed in the hospital, the more we began to worry that something else may be going on with our baby boy.

The next step in our process was to do a Hida Scan, which could indicate exactly what was happening. We found out that his bile duct tree was most likely non-functioning and were given a possible diagnosis: Biliary Atresia, a rare form of liver disease. While still in shock from this news, the doctors told us they were scheduling him for an inoperative cholangiogram, where they would perform one of two things based on their findings: a liver biopsy or a Kasai procedure. This marked Kaden’s first major surgery to be performed on the day before he turned a month old.

During his surgery, they confirmed Kaden had Biliary Atresia and performed a Kasai procedure. They connected part of his intestine to his liver in hopes of allowing the bile to drain from the liver straight into his intestines. Though, if it was not resolved through this surgery, it gave him time to grow and gain weight before he could need what we feared most: a liver transplant.

For the first time since his birth, we felt optimistic leaving the hospital when he was released on March 4, 2021. Things seemed to stay consistent: doses of Vitamin E, Vitamin K, Vitamin D, a special multi vitamin, and Neomycin along with a blood sugar check 3 times daily because of hyperglycemia after his major GI surgery. Some days were easier than others, but we couldn’t have been more grateful that the Kasai procedure seemed to work. This all abruptly changed on May 20, 2021.

Kaden was admitted to Duke Children’s Hospital from the ER after he ran 102.8 degree fever at his pediatrician (any temperature over 100.4 is cause for concern). We stayed in the hospital until May 23rd after they discovered he was suffering from Cholangitis, an infection in the liver. They warned us that infections could be another sign of needing a liver transplant sooner than later.

Over the next few months, Kaden was scheduled for twice weekly weight checks at PCP and appointments with a liver doctor at Duke Children’s Hospital every 2-3 weeks. At this time, Kaden weighed as much as the average 3-month-old at 7 months old. On August 9th, 2021, doctors discovered Kaden’s bilirubin levels had risen to the highest it’s ever been, his platelet count dropped, and some of his other liver enzyme levels appeared to be elevated, as well (ast, alp, alt). Two weeks later, on August 20th, we brought Kaden to the ER for a Vitamin K IV because his INR went up, as well.

Just as things seemed like they couldn’t get any harder for our little boy, we noticed a lump in his groin area that seemed to be causing him pain and distress. On August 24th, we visited the ER where doctors found a hernia in his groin most likely caused by pressure from his enlarged organs. The next day after showing signs of being sick Kaden was tested for RSV, a viral illness that causes symptoms like trouble breathing. It’s the most common cause of inflammation of the small airways in the lungs (bronchiolitis) and pneumonia in babies. On August 25th, Kaden did, in fact, test positive for RSV.

With everything new going on, we met with doctors at Duke Children’s Hospital on August 29th, and they felt that his spleen was enlarged and his liver was bigger and harder. Kaden was officially referred for a liver transplant evaluation on August 30th.

Now that we have confirmation that a liver transplant will be necessary for our baby, we are trying to accept the reality of the situation we’ve found ourselves in. For the transplant itself, we’ll be in the hospital 2 weeks minimum at Duke and must stay close to the hospital (possibly Ronald McDonald house) for at least two-four weeks after that. My husband, Travis, will have to be out of work to help with Kaden and Aiden during this time.

With every new day comes a new challenge; we will climb each mountain that’s placed in front of us. The most important thing is that our baby is happy and healthy.

As his mother, there’s nothing I wouldn’t do for my children, and today I’m keeping that promise by doing something I rarely do: reaching out and asking for help. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Today I’m asking you all for the help we so need in our battle against Biliary Atresia. Any and all contributions are a blessing: a donation to COTA for Kadens Battle, kind words, shared experiences, or even a prayer at night. Please keep baby Kaden in your thoughts as we enter into this new part of our journey to help our child. He is loved. He is strong. He is resilient. He is happy. And he will be healed.

Much love and gratitude-
The Wooten Family

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.