Days after the Billy family welcomed their son Zorian into the world, they received news that would shape the rest of his life — and ultimately gave them a new appreciation for blood donors.
A newborn health screening showed “Zo” had sickle cell disease, a genetic disorder the Centers of Disease Control and Prevention estimates affects the red blood cells of about 100,000 Americans.
Instead of forming into healthy, circular shapes, sickle cells more closely resemble the C-shaped farm tool for which they are named. They are harder and stickier than normal blood cells, which can cause them to clump and obstruct blood flow. They also die off, causing a constant shortage of healthy blood.
“It’s a very serious illness to have,” said Zo’s mother, Janelle.
People with sickle cell disease often require blood transfusions to help alleviate different health issues, though no two cases are exactly alike. Some patients require regular blood transfusions, with recurring appointments for months or years. Others need transfusions less frequently, but they can occur in life-or-death situations — such as the one Zo experienced just a few short weeks after he was diagnosed.
‘LIKE HAVING THE RUG PULLED FROM UNDERNEATH YOU’
Zo was born in November 2018 and diagnosed with sickle cell disease about two weeks later.
Janelle and her husband, Denzel, spent the following days learning as much about the disease as they could to find exactly what Zo needed to avoid more serious illnesses. The couple connected with doctors in Columbia that specialize in treating sickle cell patients and absorbed as much information as possible.
For the three months Janelle was home on maternity leave, everything went well. They were able to limit Zo’s exposure to bacteria and viruses that might be particularly harmful to a sickle cell patient. But once it was time for her to return to work — and enroll Zo in daycare — that became much less easy.
Only days later, Zo contracted a virus and was admitted to Mercy Hospital Springfield. Doctors told the Billy family Zo’s healthy blood levels were too low and the 3-month-old would need his first transfusion.
“We were pretty devastated,” Janelle said. “We had to be strong to figure out what he needed to make sure he got the care, but it was literally like having the rug pulled from underneath you.”
Mercy Hospital Springfield is one of the 44 local healthcare facilities that obtains blood and blood products exclusively from the Community Blood Center of the Ozarks. Because someone donated their blood at a recent CBCO drive, the hospital immediately had some available to begin a transfusion.
“I would love to tell them thank you,” Janelle said. “Your blood literally saved my son’s life. With sickle cell disease, there are so many issues that can happen just due to the rigorous nature of that disease and all the organs that it affects. That blood transfusion is exactly what his body needs in those moments to almost refresh and give him a chance to just focus on fighting the virus or focus on bringing a fever down instead of trying to do that while also not having the blood flow the way that it needs to.”
‘HE WOULD IMMEDIATELY START FEELING BETTER’
Zo needed two additional blood transfusions in 2019, each of them under similar circumstances.
“Things would usually take a turn for the worst rapidly,” Janelle said. “When patients with sickle cell disease have a fever, they need to be seen immediately to rule out the possibility of a blood infection. He’d get a fever, we’d try to get him in to get seen and then usually within an hour or so the fever would either start go going higher or he’d become more lethargic. It was usually a pretty urgent matter.”
Each of the transfusions helped flush out Zo’s sickled blood cells and gave him healthier cells, which more effectively carried oxygen to different parts of his body. Every one of them helped immensely.
“Those donations are really able to help him almost come back to life,” Janelle said. “Every time he got sick, it really knocked him down. He’d go downhill pretty fast. You’d be able to tell the impact of the blood just in his demeanor. He would immediately start feeling better, perk up and get back to himself.”
‘WAITING FOR A BOMB TO GO OFF’
Because of the chronic nature of sickle cell disease — and the additional health issues it can cause — the Billy family must always be aware of Zo’s symptoms and monitor for any signs of potential trouble.
“The best way I explain it is I feel like I’m waiting for a bomb to go off at all times, but having to remain calm and watch for the signs,” Janelle said. “I’m watching for temperatures, watching for lethargic behavior, watching for slight changes in behavior or in mannerisms. It heightens worry as a parent — heightens anxiety as a parent — because you want your child to live a very normal life and be healthy, but it is a very serious illness to have. Sickle cell disease can damage major organs. It can cause pain crises that can leave a patient debilitated by pain that will require a hospital stay and numerous medications to help just bring comfort. It could cause strokes. It could cause eyesight issues. The list just goes on and on and on of what it could do. Instead of focusing my energy and thoughts on the things that can go wrong, I focus on what we could do in the daily life to make sure that he is OK.”
The Billy family ensures Zo never misses his medicine. They always keep him dressed appropriately for the weather, as temperature changes could cause cells to clump and trigger a pain crisis.
They make sure he’s always hydrated, which would make it easier for the medical staff to find a vein if he ever needed another sudden blood transfusion. And the entire family is doing their part to ensure that local hospitals here in the Ozarks always have blood available for any patient who may need it.
‘WE UNDERSTAND JUST HOW GREAT THE NEED IS’
About 1 in 7 hospital patients will require a blood transfusion during their stay.
Every day, hospital patients throughout the Ozarks need around 200 pints of blood as they undergo surgeries, battle illnesses and recover from catastrophic injuries. This lifesaving and essential medicine cannot be manufactured. It has to come from volunteer donors, such as the ones who saved Zo’s life.
“Our goal as a family is to continue to spread awareness for blood drives and people donating blood at any chance we get because we understand just how great the need is — and the importance of having people donate,” Janelle said. “We will always use whatever platform we have available to push for that.”
Denzel is a long-time blood donor. He and Janelle partnered with a local church to host a blood drive during Sickle Cell Awareness month last September, sharing Zo’s story to encourage donations.
While Janelle is unable to donate blood herself, she frequently volunteers at drives and remains a vocal advocate for blood donations. She even starred in a Community Blood Center of the Ozarks commercial highlighting the importance of keeping your donations local, to help patients here in our communities.
WATCH THE VIDEO:
“The importance of people donating is at such a greater need,” Janelle said. “Not just because of my son, but because there are lots of other sons out there and lots of other daughters out there and lots of other moms and dads and grandparents and whoever else it may be that could be in need of that.”
‘IT’S WHY I SHARE MY SON’S STORY’
When Zo was first diagnosed with sickle cell disease — and subsequently received his first blood transfusion — Janelle and Denzel didn’t realize just how many parents had been in a similar situation.
“One of the biggest things that we wish we had when we were learning and figuring things out with his illness was a community of other parents that were going through the same thing,” Janelle said.
By sharing Zo’s story, they hope to help other families who have yet to discover that community.
“It’s easy to feel like you are alone and that your child is the only sick child,” Janelle said. “I actually enjoy telling our story because if it can help another parent dealing with a 3-month-old that has sickle cell disease, then it means that what he went through was not in vain.”
Each blood donation can help up to three people with illnesses like sickle cell disease. By organizing the blood drive and recruiting new donors, Janelle and Denzel have already helped save countless lives.
And if Zo’s story inspires additional people to give blood, so many others can be saved.
“It’s a huge blessing to me to know that people are here that care that are donating, but that doesn’t mean that the mission needs to stop,” Janelle said. “I think that we can have more people donate. I think we can help more people, that we can save more lives. It’s why I share my son’s story. I know that we’ve had a lot of people who maybe thought about donating blood beforehand, but in close relationships with us and watching our son’s story unfold they were ready to roll their sleeves up and donate blood anytime he got sick. It’s amazing to see the goodness in humankind sometimes.”
Donating blood with the Community Blood Center of the Ozarks allows more than 40 local hospitals to continue to provide lifesaving treatment to friends, neighbors and loved ones here in our communities. There is no other organization that supplies blood and blood products to these hospitals, who rely exclusively on CBCO donors to help patients like Zo. What kind of stories will your donation inspire? Click here to find a drive near you.