Welcome to ‘I Sickle Well,’ a Chronicle of a Mother’s Caregiving Journey

Would I be a good mother to him? Would he have a good quality of life? How would I know if he is in pain, and would I be able to soothe him? And most importantly, would he hate me for bringing him into the world?

These were just a fraction of the questions running through my mind before the endless crying began.

Sickle cell is not new to me. I have many family members and friends who live a relatively good quality of life with the condition. So why did my son’s diagnosis frighten me so much?

It didn’t take me too long to figure it out: It was the pain.

I know too well the intermittent, incessant pain, the needles, then the transfusions, the unconscious, drug-induced state, the lack of appetite, the frustration, and when that phase finally passes, the slow, annoying recovery.

Only for it to repeat itself over and over again.

Oh, I knew exactly why I was frightened! How could a little body cope with all of that? And how could that be his fate for the rest of his life? What I would give to take the pain and give him my health.

Those thoughts plagued me for months. They still do, but not as severely as in the early days.

It took a few months to come to terms with his diagnosis, but once I did, I knew I was going to fight with all my strength to give him the best quality of life. I was determined to turn this situation around and deal with it from a position of strength, faith, and positivity.

I knew I was in a better position than most. I am a biomedical scientist and registered nutritionist. I studied sickle cell extensively during my bachelor’s degree courses, and I had firsthand experience helping close family members recover from several crises. However, sickle cell affects people differently.

Some people have a severe disease course, while others have it mild. My son could fall on any part of the spectrum, but I could use my knowledge and experience to steer him toward the mild end. With that thought, I formulated a plan: I would use my science and nutrition knowledge to manipulate his condition’s course.

I had a clean slate to start on, and I was going to use that to my full advantage. So, I began reading every research article about diet and sickle cell, translating the information into his and my diet.

The good news is that it’s working out! Now a toddler, he’s at a healthy weight and continues growing well. He’s not taking any medication, not even penicillin. He’s had no crisis or dactylitis — swelling and pain in the hands or feet — and he’s been able to recover from vaccine fever and colds within 48 hours.

Diet is an underexplored area in sickle cell management, which is unfortunate, because studies — albeit few — show that it plays a crucial role in the severity of sickle cell.

This column, titled “I Sickle Well,” will chronicle a mother’s journey of keeping her son sickle pain-free and well with nutrition.

Welcome.

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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.