One-year-old Khalil’s hospital stays are so frequent, his mom, Brittney, keeps a packed bag by the door.
Before he was even born, a test determined Khalil would have sickle cell disease. Another test after birth confirmed the genetic blood disorder.
Though the prenatal test allowed Brittney to research and prepare for many of the challenges her son would face, she wasn’t prepared for the perinatal stroke he suffered just 24 hours after entering the world.
“We were in the NICU for a week,” she said. “I couldn’t really touch him at all. There were tubes everywhere. But slowly, surely, he recovered.”
Thankfully, the effects of the stroke were minimal and Khalil was able to get better quickly. But at only 5 or 6 months old, he fell ill again. Brittney knew something was wrong when her usually energetic baby became so lethargic and tired he could barely crawl.
They rushed to Atrium Health's Levine Children’s where tests showed a bad cold had wiped out Khalil’s blood count. The infant was confined to a bed for nearly four hours as he received his first blood transfusion.
Khalil was strong and kept a smile on his face throughout the entire process, just like he did last Thanksgiving when another bad cold landed him back in the hospital. A blood transfusion once again brought back the sweet little boy’s energy.
“He’s had four transfusions,” Brittney said. “Any time we were in the hospital, he was having a blood transfusion. It’s always so hard to start an IV because his blood vessels are so small. They even have to send the special NICU unit up there sometimes. He still handles that so well. He’s truly brave.”
I just try to be as strong as I can for Khalil, advocating for him as much as possible."
Though none of Khalil’s medical troubles have been caused by sickle cell, Brittney fears the day a sickle cell pain crisis sends him to the hospital for yet another stay.
“When you have kids, you worry about little things – when they go off to college, making sure they’re around the right crowd,” Brittney said. “But a child with sickle cell disease, it’s more than that. It’s making sure they choose the right career path – they can’t go out here and do construction. It’s too much on their bodies. It’s an additional worry, but you learn to incorporate that.”
Brittney has taken it upon herself to advocate for her son and others battling sickle cell. She shares their family’s story and information about the disease on her blog, Mommy’s Journey. She volunteers at Piedmont Health Services and Sickle Cell Agency. She even makes bracelets to sell and raise awareness for sickle cell on her website, www.momsagainstscd.org.
“I just try to be as strong as I can for Khalil, advocating for him as much as possible, and sharing our story on my blog,” she said. “My thing is just invading people’s space with the information because they need to know it.”
Brittney hopes to help educate Khalil’s daycare and other local childcare facilities about sickle cell. By the time he enters school, Brittney’s goal is to have his teachers and hopefully even his friends informed about the disease and how to help him and others like him through a crisis.
“I feel like there are a lot of people who need to be aware,” she said.
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