COTA for Baby Lucas

Our Story

Lucas was born on February 28, 2024, at 1:30 am via a planned C-section, arriving a day earlier than expected. His birth and stay at Highland Hospital were normal. A few days later, we noticed Lucas had a slight tan, but didn’t think much of it. During our first wellness check, our fill-in pediatrician recommended blood work as a precaution. That evening, we received an unexpected call from the pediatrician, informing us of an issue with Lucas’ bilirubin levels and directing us to the Tower at Strong. Dan and I were in disbelief, thinking there must be a mistake.

The following days were confusing and painful for our family. We had no idea of the challenges ahead. After five days in the hospital and many tears, we were sent home. The doctors wanted to rule out biliary atresia and advised us not to Google it, but we did anyway. We were soon contacted to meet with a hepatologist in NYC about Lucas. We packed our bags before Easter and headed to NYC. After a few hectic days, it was determined that Lucas likely had biliary atresia. He underwent a Kasai procedure, which involves removing the blocked bile ducts and gallbladder and replacing them with a segment of his small intestine.

On Good Friday, Dan and I walked six miles through New York City to keep our minds occupied while Lucas was in surgery. Hours later, we were called back to the hospital, and the procedure was complete.

After a few more days, canceled flights, a snowstorm, and a solar eclipse, we were determined to get home to our son Henry. Once home, I researched more about biliary atresia and found supportive communities like BARE and Liver Mamas. I posted questions about life after the Kasai procedure, hoping to avoid the need for a liver transplant.

As we gathered information about pediatric liver transplants, we decided to switch to NYP, which has been incredibly supportive. Dan and I worked tirelessly to ensure Henry had a normal summer and Lucas received the care he needed.

With the support of family, friends, and community services, we found a new normal. We know Lucas will need a liver transplant, but we’re unsure when. We stay in close contact with NYP, receiving updates daily or weekly. Every 4-6 weeks, Lucas is weighed at Twelve Corners, which has been instrumental in saving his life.

Now, we wait. We wait to see if his blood draw numbers go up or down, and whether he will need a transplant sooner or later. This waiting period is incredibly difficult, and I wouldn’t wish it on any family. However, we have an amazing support team both at home and away. Lucas, now 10 months old, is the sweetest boy, always happy and waking up with a smile. He is crawling, enjoying new foods, and bonding with his big brother, Henry. Their nightly races and giggles bring us joy.

We are in an uncertain season of life, and we appreciate your love on our journey to get Lucas the care he needs. We are forever grateful to COTA and everyone who has helped us and to everyone who supports COTA for Baby Lucas.

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.