Bloomington, Indiana – November 3, 2015 – As the chill of November sets in, thoughts turn to holiday planning, Thanksgiving preparations and gratitude. A New York family whose young daughter received a life-saving bone marrow transplant from her baby brother has much to celebrate during this month of giving thanks.
Lori and Ryan Patton were thrilled to discover they were pregnant with their first child. When Katie arrived on April 20, 2009, they were overjoyed. But shortly after her birth, the baby was diagnosed with Diamond Blackfan Anemia (DBA). DBA is a rare, genetic blood disorder that occurs when bone marrow fails to make red blood cells that are essential for carrying oxygen from the lungs to all other part of the body. Normally, bone marrow produces all of the blood cells a child’s body needs, but sometimes genetic defects disrupt the marrow’s ability to make these vital cells. Baby Katie’s only chance at long-term survival was a bone marrow transplant.
Lori, a high school teacher, shared this narrative about the family’s transplant journey to date with the Children’s Organ Transplant Association (COTA):
Katie was a preemie, a 32-weeker. She spent 24 long days in the NICU. She was a miracle from the day she was born. It was not the original plan to deliver Katie on April 20, 2009, because I was not in labor. The morning of April 20th I spent nearly three hours with the pediatric cardiologist having a sonogram because there was fluid around her heart and abdomen. After a consultation, it was determined she would stay in the womb for another few weeks. But then my obstetrician said, “I just don’t feel right about it. My wife and I are going to deliver you today. Go home pack a bag and meet us at the hospital.” I was completely surprised. I did as I was told and a few hours later our 4 pound 13 ounce baby girl was born via cesarean section. We later found out if she had not been delivered that day she likely would have been a still birth because of her extremely rare blood disorder, Diamond Blackfan Anemia (DBA). We named her Kathryn Grace because it truly was by the grace of God she is here with us.
After a variety of tests and 24 very long days in the hospital, we were able to take our baby girl home. Katie did not have the ability to suck/swallow, had acid reflux, had colic, cried between 10 and 12 hours a day, and needed blood transfusions every two to three weeks. Ryan and I were way out of our element. How were we going to take care of a baby who barely fit in our arms, but cried louder than anyone we had ever met?
We were both scared, and this journey was only just beginning. Instead of being depressed we decided to read everything we could in order to learn more about rare blood disorders and preemies. We knew Katie was going to require regular blood transfusions for at least a year so we first set up a directed donor system so Katie could receive blood from the same 15 or 20 blood donors.
We soon discovered the DBA Center for North America was in New York, and we worked closely with experts there to learn more about current research and genetic testing. Our goal was to find the gene causing DBA in Katie. After several rounds of genetic testing we were informed that although in nearly 70% of DBA patients there is an identifiable gene, Katie did not fall into that category. We were devastated. We sat down again with our team of doctors and went through our options. It was always the same answer, “Transfusions and monitoring of iron overload for the rest of her life because the steroids did not work. Transplant is not an option any longer because you could not find the gene therefore you do not know if you carry DBA and will pass it on.”
I distinctly remember the moment we were told we could not have any other children and also told Katie was no longer a candidate for transplant. I thought to myself no one will tell us what we can and cannot do. We found a geneticist who would work with us and a reproductive specialist who had worked with other DBA couples and started the process of becoming pregnant with a sibling donor.
This took more of a toll on us financially and emotionally than I ever imagined. Since I had no trouble getting pregnant the first time I assumed I would immediately get pregnant the second time. I could not have been more wrong. I failed to take into account one very important factor — stress.
Ryan and I came to a breaking point one night when he told me he no longer wanted to move forward. He decided we were destined to have one child. We were nearly out of insurance money that would cover the IVF process and had already spent $25,000 out of our own pockets. It seemed all the decisions were being made for us.
In that moment I said to Ryan, “I want you to think back over your life, every moment — going to school on the first day, playing the sports you love, going away to college, working internships, starting your career. Now I want you to think about Katie growing up … having blood transfusions every two weeks, likely living with us because she can’t hold down a job and eventually dying at the age of 40 because of an iron overload that attacks her organs. If that is what you want for your daughter then by all means we will stop. But if it isn’t we need to move forward, put our faith in God and trust we will get pregnant and the new baby will be able to be Katie’s bone marrow donor.”
Fear surrounded us, but we moved forward and we got pregnant. Brady Christian was born on June 1, 2012, which was the same day as one of Katie’s blood transfusions. I took her to the transfusion in the morning and delivered him that evening. I promised Katie I would never miss one of her transfusions … and I never did.
Once beautiful Brady was born, we began our one year countdown to transplant. Little did we know it would be an extremely difficult year that was plagued with more hospitalizations than we had previously experienced. There were several major transplant setbacks during this time, and our hope was dwindling.
One of the biggest setbacks? Needing to find a new transplant center.
So we began looking for a new transplant center, which was a difficult process. Sloan Kettering Cancer Center came highly recommended so we visited. It was the perfect choice for our family, in terms of the facility and the amazing staff. On August 12, 2013, we arrived at Sloan Kettering with our luggage and room decorations. We felt that we had prepped Katie for what was about to happen as much as we could. But when we got there, we were sent home. Katie blood work was off and we could not proceed. We were heartbroken. Each week for the next three weeks we were sent home because her blood counts were off and they could not figure out why. The transplant was postponed until the end of September.
On September 30, 2013, we were admitted and Katie had surgery early to have a line inserted for the numerous medications she would need. Around 11pm that evening we were moved to the 9th floor, which would be our home for the next two months. Chemotherapy started the next day, and the first five days were not bad. Each day, Katie played, ate her normal amounts of food and really didn’t seem to be having any issues.
But then things took a change for the worse. Katie’s chemo symptoms, including her inability to keep food down, lasted four weeks. These days were very hard. I was constantly worried about both Katie and Brady. My little guy had just undergone a bone marrow harvest and I wasn’t able to be around him at all. Brady was unable to visit Katie the entire time she was hospitalized because of her compromised immune system. I missed him terribly, but I knew my focus had to be on Katie. Even though she was struggling, every single day we got her up out of bed and kept her going.
About three weeks after receiving Brady’s bone marrow, things started looking up for Katie. She started to get stronger; we were excited to think we might be able to be released to our temporary housing close to the cancer center. We were released from the hospital mid November 2013, and Katie has not had a blood transfusion since November 3, 2012. Although we have experienced setbacks here and there we continue to move forward. We feel blessed on a daily basis and for the first time in a long time, we have a bright future ahead.
Working with the Children’s Organ Transplant Association (COTA) has given us hope. Without COTA’s support, both emotionally and financially, this already stressful situation would have been even more so. With COTA, we did not have to worry constantly about money and the unending bills. Every time we speak to anyone at COTA, they ask first and foremost about Katie and the rest of our family. They truly are a wonderful people. We still are living the transplant process and will continue to do so for some time, but we are extremely grateful to have such a strong support system behind us, and a financial safety net supporting us.”
Happy Thanksgiving, Patton Family, from your COTA Family.
For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1561545023toc@m1561545023ik1561545023.