Caring for a Child with Sickle Cell Disease

By Malerie Hartsell, MPH, CHES, DHEC’s Children with Special Health Care Needs Program

Sickle Cell Disease (SCD) affects many South Carolinians across the state who either have the disease or care for someone with SCD who needs their assistance. DHEC employee Brenda Green knows all too well the impact that SCD has had on her life and the life of her son, Braden.

Brenda is an environmental engineer with the Bureau of Water in the Domestic Wastewater Permitting Section. Ever since her family was informed of her son’s SCD diagnosis, she has been a champion and advocate for Braden and his health.

To help raise awareness during National Sickle Cell Awareness Month, Brenda did a Q&A interview with DHEC’s Children with Special Health Care Needs program to share a small piece of her SCD story and how the disease has impacted her family.

 Q:  Tell us about your son, Braden Green.

A:  Braden is 10 years old and in the 5th grade at Satchel Ford Elementary School. He loves school and his favorite subject is math.  He loves to draw, paint and create art.  He plays the piano, drums and just began the strings program at school where he will play the cello.  He loves ALL sports but plays little league baseball.  He knows the stats on almost all baseball, football and basketball teams and their star players.  He’s a really smart and sweet kid.

Q: You and your husband have three children, and your son has sickle cell disease. What are some things you have to be mindful about when raising and caring for Braden that you don’t necessarily worry about with your other children?

A:  I’m more mindful about a lot of things in comparison to his big sisters. It was more difficult during the first years of his life.  He wasn’t able to tell me where it hurts and how the pain felt.  I had to wonder, when he was an infant, whether he was crying because he was hungry, teething or having sickle cell pain.

Now that he is older, we use the number scale for pain that is used in the hospital (1-10 with 10 being the worst).  He can also tell me if it’s a sharp, dull or burning pain. I have to make sure he’s hydrated especially when he’s playing or practicing baseball.

I have to make sure he understands that he has to wash his hands and try to keep his hands from his face. Germs are not our friends at all times.  The common cold can be very dangerous to him.  He is most susceptible to pneumonia and has been hospitalized several times because of it.

I have to make sure he’s not too cold in the winter or too warm in the summer.  Even though it’s warm now, I make sure he takes his jacket to school just in case the classroom is cold.  Extreme temperatures can cause pain crises for him.

I worry about him at birthday parties, especially if they are running and playing.  He gets tired quicker than the average child but he will push himself if he’s not reminded to rest.  This is the same with him playing sports.  I’m also more mindful of the types of sports he plays.

Q:  What have you found to be the most helpful for your family since finding out Braden has SCD?

A: The most helpful thing that my husband and I have found is to be very observant of him and his symptoms and to make sure we’re responsible when it comes to his medical care.  We call his pediatrician if we are concerned and we make sure he attends all routine appointments.  It’s important that we continue to learn as much as we can about SCD and be very proactive with his care.

The pain level chart, I reference earlier, has been very helpful to us.  We now understand his pain tolerance better.  He can function normally until his pain is a 5.  At that point, he will take more frequent breaks and may ask for his heating pad.  Usually a pain of 8 or greater requires pain medication.  If we’re unable to control his pain at home, then it requires medical attention.

 Q: Braden has been attending Camp Burnt Gin for several summers. What has that experience been like for him and for your family?

A:  The experience has been wonderful.  He has made friends and has enjoyed being with other children who battle the same disease as him.  It’s his opportunity to relax and have fun without mommy hovering close.  My husband and I are happy that he can go to an overnight camp where he can have fun, experience the camp life just like the healthy kids and all the while at a safe location with his hematologist, Dr. Carla and his nurse, Nurse Julia on site.  What more could we ask for?

braden-and-dr-carla-camp-burnt-gin

Braden and Dr. Carla at Camp Burnt Gin, a summer camp in Wedgefield, SC for children with physical disabilites or chronic illnesses.

Q:  What advice would you give to other parents who have just learned their child has SCD?

A: Be encouraged and know that your child is so special and will teach you the true meaning of resilience and strength.  Use your resources.  Your child’s hematologist, pediatricians, nurses and other caregivers are all there to help your child and your family battle this disease.  Learn as much as you can. Document all that you learn and ask questions.

Finally, never, I mean never, be afraid or hesitant to be the main advocate for your child.  Through you being your child’s advocate you will teach your child to be able to advocate for themselves as they get older.

For more information on DHEC’s Children with Special Health Care Needs division, visit www.scdhec.gov/Health/ChildTeenHealth/ServicesforChildrenwithSpecialHealthCareNeeds/

 

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