Today, a special little boy named Fuentez Guerra would have turned nine years old. Because of him and the selfless decision of his extended family, two families – the Sprague family in Indianapolis, Indiana and the Foster family in Barboursville, West Virginia – are hugging their kids today and celebrating the life that saved both Liam and Maren’s.
Liam’s Heart, by: Carolynn Sprague, Liam’s mom – At the start of my nursing career, I remember taking care of a patient who was dying. I remember the mother inquiring about organ donation. I remember thinking how wonderful the mom was to inquire during her tragedy. I’ll be honest, until my son Liam got sick, I never gave much thought to organ donation. Sure I always checked the YES box at the DMV, but that was it.
Organ donation took on a whole new meaning for me the day Liam was diagnosed with cardiomyopathy and we heard his doctors say, ‘It is not a matter of if, but when, he will need a heart transplant.’ It was little more than three months later that he was officially listed for his heart transplant.
While waiting on the list, Liam suffered a massive stroke. The stroke changed him, and us, forever. It took his ability to walk, talk, sit, stand, and eat. His status on the organ transplant waiting list was quickly changed to ‘inactive,’ and we honestly didn’t know if they would relist him.
The stroke happened on October 1, 2013 and we breathed a huge sigh of relief when his list status was officially changed back to active on November 26th. The heart he needed was again a possibility and we were overjoyed.
We lived at Cincinnati Children’s Hospital Medical Center for 315 days. When I would look at my son with the tubes, the wires, the IV pumps, the monitors, his Berlin heart, it made me so very sad. I didn’t understand how any of this happened. How we did get to this point? How did my child become so sick, so quickly? I wanted to take his pain away. I would have traded places with him in an instant. I am a nurse; I help make people better so they can go home, yet I couldn’t do that for my own child.
All I could think about was Liam’s need for a new heart. Every time I saw the heart doctors, I stopped breathing and prayed they were coming to tell me they had a heart for my son. My heart always broke when it was just a normal visit. What’s even more awful was that I would pray for a heart to become available. And then I would feel horrible because I knew a family had to say goodbye to their child for my son to survive, and praying for it just seemed wrong. None of it seemed real. But my reality was real: Liam was sick and needed a new heart, but I had no control over when it would happen. All I could do was pray and wait. I felt so helpless.
And then our prayers were answered. Liam received his perfect heart on February 25, 2014. I was the happiest I had been in a very long time – full of such hope. And then it hit me: another family was facing what I feared most. They were saying goodbye to their child while my son was getting what he so desperately needed to survive. How could I be happy knowing they were mourning? It was all so bittersweet. I cried and prayed. But I also found comfort knowing they chose LIFE. They chose to help others during their difficult time. Not only did they save my son’s life but they saved mine too.
Maren’s Liver, by: Travis Foster, Maren’s dad – Maren was diagnosed with a rare liver disease called Biliary Atresia when she was an infant. I remember the day I heard our baby had a liver disease like it was yesterday. I was trying to keep it together because we had our son with us and my wife, Ellen, was so upset. At this point we didn’t know what disease she had but just knew her liver was not working properly. Biliary atresia was at the bottom of the doctors list of what could be wrong. As different tests started coming back negative, it was looking more and more like it was biliary atresia. At this point I knew it was going to mean a liver transplant.
We asked if she would be able to live a normal life and were told that she could but it was going to be a long road to get there. We were absolutely devastated and the only thing we could do was trust the doctors and pray that she was going to be ok. I felt helpless at first, but knew it was important to learn how to take care of her before and after transplant and let the doctors do the rest. Fortunately, it was very easy to trust the wonderful doctors we have.
There are no known causes of the disease but there are theories that it is caused by the Rotavirus. The only true cure for the disease is to have a liver transplant. If it is diagnosed within a child’s first 90 days of life they can do a procedure called a Kasai, but typically at some point in the child’s life she or he will need a liver transplant. We were referred to Cincinnati Children’s on November 18th and had our first appointment the next day on the 19th. The following week we took her back to Cincinnati for a liver biopsy. Maren was officially diagnosed on November 26th, 2013 when she was five months old.
Every time the phone rang after Maren was listed for transplant, our hearts skipped a beat. It was the topic of almost every conversation Ellen and I had. It completely consumed us, both emotionally and physically. We did our best to keep things normal for our 5 year old son Jackson but I know it affected him. My hope is that someday he will realize how much help he was to us, especially when the call came on Februarly 25, 2014 saying that there was a liver for Maren.