Caring for a Child With Sickle Cell

Most of the time when we are dealing with sickle cell disease, we are focusing on the pain episodes, sleepless nights, and all the pain medications. What we often forget is that sickle cell disease has more effects than just the common pain episodes. Sickle cell disease can be very scary to the point that you question everything around you.

What is it like to be a mother of a child with sickle cell?

Can you imagine? Looking at your little baby, not knowing what to expect? What is going on? Will my baby be able to ever walk or talk again? I know a mom, her name is Sarah, who had all these questions when something very unpredictable happened to her little baby Joshua.

Meet Sarah, the mom of a warrior living in Kampala, Uganda. Sarah is the mother of 3 boys: Joshua (3), Jeremaya (5), and Job (20). Being a mom of 3 boys gives you a lot of energy and is such a blessing. And still, there was something very unexpected waiting to knock on her door.

After Joshua was born, they found out via the newborn screening that he has sickle cell disease. She knew that her life would be different, but she was ready to take care of her beautiful son. Sarah prepared for a life as a mom of a warrior. She educated herself on sickle cell disease, and she did a great job!

Joshua was a happy kid and did not have many pain crises during the first year of his life.

Joshua's symptoms

In June 2019 her little baby developed a fever. They managed it with paracetamol as a fever. The first diagnosis was malaria. In the hospital he got malaria medication to get better. But it didn’t get better, it only got worse.

When she got home with her baby, he had blood in his mouth and wasn’t responding to her. She went on a boda boda (motorcycle) with him because she couldn’t afford the ambulance. After arriving at the hospital, she waited for the results while her little baby was in pain. 

An unexpected complication

What she never expected happened... a stroke! The doctors told her that her little baby boy had a stroke. He was in a coma for 11 days. He couldn’t talk anymore. He lost his vision. His sight returned after 6 months, but he couldn’t walk, talk, or eat by himself. Since then, she has fed him via an INDI tube.

Caring for a child one with sickle cell

Taking care of her baby boy became her full-time job. She had lost her job as a teacher because she needed to take care of him. It is very important for her as a mom to make sure that Joshua has the best care.

When Joshua has a pain crisis, it is double the frustration because he can’t always share his pain with her. She works with her gut feeling as a mom. The way he cries and the way he looks at her makes her understand what is going on in his little body. She knows exactly when he is uncomfortable.

While talking to Sarah, I got the chance to say hi to Joshua. He gave me his golden smile. Joshua is a very happy kid, and that is one of the motivations that keep her moving forward as a mom. As a mom, Sarah would like to share her experience with others because nobody prepared her for this kind of situation. She believes it is important that we as a sickle cell community use our voice to raise awareness on every piece of sickle cell disease.

The importance of community

“There are moments that I feel bad, helpless, and bad. But that won’t help my son! Nobody understands the situation, and that can be very frustrating.”

Sarah is providing for her family in a very creative way because she needs to give her 3 kids the best of the best. She has lost her job as a teacher, but she has 2 healthy hands. So she makes beautiful crafts to be able to make some extra money. No work, no pay!

Sarah's advice

Sarah's to other parents: "Love yourself, love your kids. Take care of your kids. Do something to raise money, so you don’t have to wait for others."

Her advice for employers: "When a mother has a sick child, it is a situation [in which we] need understanding and love, instead of losing our jobs."