Asking Questions Helps Family Manage Sickle Cell Disease
Nia Mullins’ parents, Quenton and Emily, learned she had sickle cell disease when she was a newborn.
Emily Mullins answered the phone a few days after bringing newborn daughter, Nia, home from the hospital. It was a nurse calling with news.
Nia had sickle cell disease, a serious blood disorder.
“I was looking at Nia and wondering what her future would be,” Emily says. “I prayed a lot and tried to look up anything I could find about the disease.”
Her husband, Quenton, remembers struggling to make sense of what was happening.
“You don’t know what you’re about to face,” Quenton says. “Things just start to spin in your head. You're trying to grab as much data as possible. I’m in the medical field, but I wasn’t initially prepared for what was about to happen in my own family.”
Sickle cell disease gets its name from the hard, sickle-shaped blood cells that form in the bloodstream of people with the disease. A sickle is a crescent-shaped farm tool.
Healthy red blood cells are soft and round. Sickle-shaped cells can cause serious symptoms such as severe pain, frequent infections, and stroke. Babies are born with the disease when they inherit a copy of the sickle cell gene from each parent.
In search of answers
Quenton and Emily felt alone. No one they knew had this disease. They were not aware that they each had a copy of the sickle cell gene. Their older children, Sierra and Quenton Jr, didn’t have sickle cell disease.
The Mullins family, who now lives in North Georgia, moved frequently when Nia was younger. Hurricane Katrina destroyed their home near the Mississippi Gulf Coast in 2005. Nia was born soon after and was exposed to different health care providers. Some of these providers knew little about sickle cell disease.
With few places to turn, the couple searched for information and a road map to stable treatment or a cure. They prayed, read, searched, and worked with every support group they could find.
Nia Mullins’ parents kept track of every medical detail about her in this binder.
Organizing information
Emily and Quenton kept detailed records of Nia’s symptoms, care, and treatment in a 3-ring binder. The binder included information about what medicines worked and which ones to avoid. They kept every printout from Nia’s care providers.
The binder included instructions and care tips for other family caregivers who helped take care of Nia. It had a copy of her 504 plan for school. The couple put their notes from health care visits in the binder.
“We asked probing questions,” Quenton says. “It helped us understand more. If we didn’t understand, we asked questions until we did.”
Resources for families
Thinking back, Emily and Quenton say there are many things they wish they had known. Now they try to share what they know with others.
“I wish we would have known what to do, where to go, who to talk to,” Quenton says. “It would have helped us as a family. We were trying to take care of 3 kids. Nia needed so much attention and resources. How do you navigate that? What resources are available? Those things were very intimidating.”
Emily says it is important that family caregivers communicate well with each other. Caregivers and siblings should also take care of their mental health. Stress and anxiety are common in families of sickle cell patients.
The couple and their children had individual and group therapy. They found out more about themselves and each other. They learned how to deal with Nia’s challenges at school.
"I wanted my daughter to know that 'this diagnosis is not you, and you are not this diagnosis'."
Nia Mullins is known by family and friends for her excellent fashion sense.
Educating friends and teachers
Nia lost friends because she was often absent. “Children said things that they didn’t realize would hurt her,” Emily says. “Stuff like, ‘I thought you died’ because she had been gone for a while.”
Some teachers did not understand the disease and its effects. Some thought Nia was trying to avoid schoolwork when she asked to go to the restroom or nurses’ office depending on the situation.
People with sickle cell disease need frequent restroom trips because they need to stay hydrated to prevent a crisis. They also have an increased tendency to become ill from basic common seasonal diseases or viruses, and may spike a fever, have pain, or need to see the nurse for additional care.
Life after treatment
Nia, who is now 19, had a stem cell (bone marrow) transplant in 2022. It cured her disease. Her dad Quenton was her donor.
A recent high school graduate, Nia loves learning about other cultures, especially Asian cultures. She wants to study Mandarin and has decided to study social Anthropology at Kennesaw State University.
