Brantley's HLH Story: Teaching his Family the Value of Life

Shannon Brooks, Brantley's mom: "There are no words to describe the joy and the happiness of bringing a child into the world. Especially one as caring and as sweet as Brantley. There’s just nothing else like it." 

Brantley Brooks entered the world a happy and healthy baby. At just 3 months old, after a week of having what was thought to be a cold, Brantley was admitted to the hospital near his home in Vermont. Blood work sent to Cincinnati Children’s confirmed that Brantley had Hemophagocytic Lymphohistiocytosis (HLH), a life-threatening immunodeficiency.

Kyler Brooks, Brantley's dad: "It was definitely a whirlwind of having a child and finding out 3 months later that he had a life-threatening disease that we knew nothing about."

Michael Jordan, MD: "HLH is a disorder of immune regulation when the immune system turns on, it doesn’t really quite know how to turn off. And when they don’t turn off, it makes you extremely sick, and can be fatal if you don’t get immunosuppressive medication."

Immediately after being diagnosed, Brantley was air-lifted to Cincinnati Children’s, an HLH center of excellence.

Mom: "They said the term 'bone marrow transplant,' and neither of us exactly knew what that entailed, just that it was going to be a very long and hard road ahead of us."

Brantley’s road to transplant began with participating in a clinical trial at Cincinnati Children’s that combined chemotherapy and immunosuppressive antibodies as a form of therapy to suppress his immune system.

Dr. Jordan: "You need therapy to sort of turn off the overactive immune system that sort of is revving endlessly. A neutron bomb for the immune system. Really just clear the decks in order to turn off the HLH to make it safe to even think about getting to transplant."

Rebecca Marsh, MD: "It’s essentially like if you’re clearing out space for a garden in your yard. You give the chemotherapy to kill what’s already growing there so that you have a place to plant either the new seeds or the new stem cells from your bone marrow donor." 

Fortunately, Brantley didn’t wait long for a donor match to be made, and received his first bone marrow transplant at just 5 months old.

Mom: "Essentially, his entire life was in the hospital. So to him, that was his normal. He handled it very well. The second time around, he was a little bit older. He was 3 when he relapsed in 2015."

Dr. Jordan: "The transplants don’t always stick as well as you’d hope. If over time, if the recipient’s marrow tends to outgrow the donor’s bone marrow, then you can get into trouble."

Dr. Mash: "You actually become prone to developing HLH again. And so that was unfortunately what happened to Brantley. He was actually home and he actually developed some symptoms that his brain was having some inflammation." 

Mom: "Brantley started complaining of headaches. He kind of began to lose his balance a little bit. He was not himself."

Dr. Marsh: "His doctors there recognized very quickly that that might be HLH coming back in his brain. And that was indeed the case, and so at that point he came back to have a second transplant." 

Brantley’s previous donor, Don, was able to give of himself yet again so that Brantley could live.

Mom: "What do you say to the person that has saved your child’s life three times? I mean, a thank you just doesn’t do it, you know what I mean? It’s because of him that we get to watch our son grow up."

Thanks to Brantley's donor, his care team at home and at Cincinnati Children's, Brantley's future looks bright.

Dr. Marsh: "I will say he’s a hoot. He’s just kind of a joker, and he’s a cute adorable kid. He’s got definitely a little personality to him."

Dad: "Brantley's taught us the value of life. Everything we believe in, the strength we have, it's because of this kid right here. He’s really our rock."

Dr. Marsh: "I have no worries about his future. I think he’s in very good hands. He’s got wonderful parents, I think he’s going to have a good life."

Mom: "He’s already defied the odds so many times. That as an adult, he’s going to be capable of anything."