My Parents’ Top Tips for Raising a Child With Sickle Cell Disease

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by Mary Shaniqua |

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In a previous column, I gave a brief overview of my family’s experience with sickle cell disease. Both my parents have the sickle cell trait, and of their four children, I’m the only one with sickle cell disease. One of my siblings has normal blood and two have the trait.

My parents have been married for over 35 years and raised my siblings and me successfully — though perhaps I’m a little biased!

I asked my parents to share their top tips for raising a child with sickle cell. Following is their advice.

The health of the child is paramount.

All children are blessings, but the emotional (and sometimes financial) strain of raising a child with sickle cell cannot be understated. Parents’ top priority should be the health and well-being of their children. My parents said that even though life happens and things do get in the way, it’s important to make sure a child’s health does not suffer as a result.

My dad always tells the story of the time I was staying with a family friend as a child and had a sickle cell crisis, so he traveled 80 miles to look after me. I wasn’t mobile at the time, so my dad had to physically carry me to the hospital. This is one of many examples of my parents dropping everything to care for me when I fell ill.

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Explain the child’s illness to their siblings.

My older brother and I are 13 months apart. He had just turned 1 when I was born and wasn’t used to having to share his parents. My mum reported that one day, when he was about 2 years old, he burst into tears when I fell ill, saying something to the effect of, “Nobody loves me anymore.” My mum realized that in my brother’s young mind, his parents were obsessing over his younger sister, and he didn’t understand why.

My mum explained to him at that young age that I required special help, as I had additional needs that he didn’t have. When my sisters were born, my parents ensured they were well informed of my illness from a young age.

This approach has reaped dividends. I have a good relationship with my siblings, and they all understand my condition and the additional needs I have because of it.

Sickle cell is nobody’s fault.

Sickle cell is hereditary; for a baby to be born with the disease, both the mother and father must pass along the sickle cell trait. To blame the outcome on a single parent means someone has an erroneous understanding of how the disease is inherited.

Sometimes in life we are dealt cards we’d rather not have, but those of us with sickle cell disease aren’t alone. The important thing is to navigate the resulting challenges as best we can.

Protect your child from the ignorance of others.

As a sickle cell patient, people say all sorts of things to and about me, some of which are particularly hurtful. Unfortunately, this often begins during childhood.

When I was young, people would tell my parents not to invest much time, money, or love into me because I was sick and had a life expectancy of only 10 years at the time. Thankfully, my parents always defended me in these instances.

As a parent, it’s important that your child knows you have their back and will defend them against anyone who makes hurtful comments.

Practice open and honest communication.

My parents encouraged prospective parents with the sickle cell trait to do as much research as they could to better understand the condition. They added that because sickle cell affects everyone differently, it’s important to communicate openly and honestly with your child.

As the child grows older, they may begin to question why they have sickle cell, or even experience negative thoughts and low moods because they’re disabled. Your child needs to know that they can always come to you. Open communication channels are imperative.

A loving environment is essential.

All children require a loving home to grow up in. Being devoted parents and cultivating an environment of love will help children with sickle cell disease and their siblings grow up to be the best people they can be and serve as pillars of support for one another.


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.

Comments

John avatar

John

Thank you for the good advice to parents. Our son is an SS survivor, who has struggled with his circumstances. He has become deeply depressed & holds little hope for having a successful adult life. It has been a long struggle for the family & we have tried to insure that our other child does not feel ignored or unloved because of all the attention his sibling required growing with the SS. What to do when & how to do it has been a big challenge because no one else in our family suffered Sickle Cell Anemia, until a cousin was born with it some years after our son. We are focused on helping him improve his mental, emotional, psychological well-being, right now. He receives a red blood cell pheresis transfusion monthly. It seems to have helped, but we now have problems getting his opioid pain medication prescriptions filled for pain crisis. Not sure if it is related to recent law suits against opioid manufacturers or not.

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