What Parents of Children With Sickle Cell Should Know

Last week, I was privileged to facilitate a discussion between two mothers who have children with sickle cell disease. I can only imagine how difficult it must be for a parent to see their child in pain from an invisible illness, a source of constant worry.

The mothers’ perspectives were enlightening, as my own condition often permits me to think only about myself. As I listened, I recognized the many similarities between these mothers’ stories and that of my own mother.

All had given birth prematurely and were shocked when their kids were diagnosed with sickle cell disease. At first, they didn’t fully comprehend what that meant, and they struggled with guilt as they grappled with the realities of the condition.

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During the discussion, I acknowledged the strength it takes to smile in front of your child while feeling overwhelmed by worry and anxiety. Both mothers expressed that they feel a sense of duty to ensure their children have what they need to lead a normal life. Information about the condition is limited, so like all parents, they’re simply trying to figure things out.

I could sense the trauma they’d experienced as a result of the diagnosis. Both moms described how they had to heal to be the best version of themselves for their children. I could relate because healing was a part of my journey, too. I had to learn that the condition isn’t mine alone — it’s a collective journey that involves my caregivers and loved ones.

I couldn’t help but deeply reflect on my relationship with my mother, which has always felt multifaceted because of sickle cell. On one hand, I can acknowledge it was her duty to raise and look after me. However, I’ve always felt guilty — even at a young age — because caring for me must have been more taxing than caring for children who don’t have sickle cell.

Looking after me meant hospital trips, random calls from school, and constantly fearing for my life. I felt a responsibility to be well and strong, and did my best to hide my pain because I didn’t want to worry my mother. But I always failed, because she could tell when something was wrong.

During my journey, I’ve accepted that it’s OK to be sick sometimes. I no longer place so much weight on my crises. This took active work in therapy and many discussions with those in my network.

I realized, though, that I hadn’t checked in with my mother to see how she deals with my condition. Based on the panel discussion, I recommend the following points of discussion for people with sickle cell disease and their parents. These topics are important whether your child is newly diagnosed or has lived with the disease for many years.

Guilt

Some parents may feel a sense of guilt for bringing someone into this world who has a chronic condition. However, it simply isn’t their fault. Many don’t know that their baby might be born with sickle cell. People with the disease don’t blame their parents, and we will go on to do amazing things with the right encouragement. As a parent, you can teach your child how to live with the condition and make the right adjustments.

Isolation

This journey can feel isolating, so it’s important for parents to reach out to others. There’s no shame in seeking help. Being a new parent is difficult, and learning about a chronic condition can make it even more challenging. Use social media or explore your local community to find other parents in similar situations. There are several charities and networks designed to support new parents and babies with sickle cell.

Well-being

As a parent, it’s important to look after your own well-being as well as your child’s. It’s essential to be the best version of yourself. Talk about your problems and resolve them in a healthy manner so that they don’t impact your relationship with your child. Try to be at peace with your situation and look for solutions instead of casting blame.

What tips do you have for parents of children with sickle cell? Please share in the comments below.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.