My Daughter Has Sickle Cell, This Is How We Keep Her Life Normal

As a mother, all you want to do is protect your kids from the world but more importantly, keep them happy and healthy. I think I speak for most mothers when I say a completely healthy baby is what you pray for, the minute you find out you’re pregnant. It’s almost like those protective instincts kick in immediately.

I was introduced to a new reality when my daughter was born. My daughter was diagnosed with sickle cell anemia during her newborn screening. Sickle cell anemia is a blood disorder that requires ongoing medical care. A person with sickle cell anemia has red blood cells that become sickle-shaped or c-shaped, instead of round.

When the red blood cells become sickle-shaped, this interferes with the blood cells’ ability to transport oxygen around the body. This can cause pain, trigger symptoms and other serious complications, such as acute chest syndrome, infection and the possibility of stroke.

Other symptoms associated with sickle cell anemia:

• Shortness of breath and/or pain when breathing
• Inflamed hands and feet
• Sudden pain in the chest
• Sudden pain throughout the body and/or joints
• Having a hard time moving parts of your body
• Dizziness
• Extreme fatigue
• Low oxygen levels throughout the body
• Inability to make concentrated or dilute urine or blood in the urine
• Jaundice (a yellowish color of the skin)

When I learned that my daughter has sickle cell anemia, my very first thought was “This is all my fault” because it is inherited from both parents.

Unfortunately, sickle cell anemia is more common in certain ethnic groups, Black or African-American being one of them. It’s estimated that about 1 in 13 Black American babies are born with sickle cell trait (SCT) /gene, and sickle cell disease (SCD) occurs among about 1 out of every 365 Black American births, according to the Centers for Disease Control and Prevention (CDC).

From our partner

Diagnosed with Advanced Small Cell Lung Cancer? Learn more about a new study for patients with ES-SCLC.

RELATED: Managing The Pain of Sickle Cell Disease

My second thought was “I won’t let this condition define her” because she has sickle cell anemia, sickle cell anemia doesn’t have her. Now don’t get me wrong, this doesn’t mean being ignorant of reality. Crisis will happen and symptoms and other serious complications are possible at any point in her life.

My daughter takes her daily hydroxyurea (this medicine makes your red blood cells bigger. Also, it helps them stay rounder and more flexible — and makes them less likely to turn into a sickle shape) and vitamins.

The goal is to maintain normalcy in her life while at the same time, keeping her healthy. From about the age of three (she’s seven years old now), I’ve been teaching my daughter to listen to her body. Why? This is so she is in tune with her body as she continues to grow and gets older.

Why this is so important:

• So she will understand her limits and/ or stressors, physically and emotionally as these could trigger a crisis
• So she will know when her body needs to rest
• So she will know her pick-me-ups / feels good to keep her in good spirits(music, painting, yoga)
• So she can do the things she enjoys

This brings me to my next point. Having a Black child with a blood disorder, it’s almost as if she was immediately put into a box. After her birth screening, I was told that my daughter should not participate in any sports, do activities outdoors like camping or swimming, and a list of other limitations that would keep her in a box. When in fact, it’s good for her to stay active and participate in different activities (being mindful of course).

I want to stress that it’s so, so, so important to find a hematologist who doesn’t just look at your child as another Black child with sickle cell anemia, but a hematologist who takes the time to learn your child, tailors a complete and proper treatment plan for your child, etc. 

From our partner

Having difficulty controlling your hypertension? This clinical trial may help! Learn More Here

If you’re in search of a culturally sensitive doctor, click here.

Every child is different. Every child’s body, symptoms and triggers are different. They should each be treated as such. I’m teaching my daughter that sickle cell anemia does not solely define or put excessive limitations on her. She absolutely can, and will live a full life.

RELATED: What Is Sickle Cell Disease?

This is how we maintain normalcy in my daughter’s life :

• Tapping into her interests and hobbies, like tennis–she’s two years in!
• Keeping her socially active. My daughter is a brownie in Girl Scouts and loves every minute of it.
• Encouraging her to try different activities
• Encouraging her to just be –give herself some grace through it all
• Introducing healthy practices into her daily life, like drinking plenty of water, eating lots of fruits and veggies
• Encouraging her daily to implement self-care in her routine
• Creating an environment where she feels like a kid, not a kid with a blood disorder (ex. Letting her play tennis, going to the outside pool) Mom tip: bring plenty of water bottles, sun hats, sunscreen and umbrellas. Take breaks from the sun, like going indoors to eat lunch.

Some other tips for raising a child with sickle cell anemia:

• Learn how to feel/check your child’s spleen for enlargement (blood may get trapped in the spleen, block blood flow and it can cause a dangerous drop in the circulating blood volume)
• Encourage your child to drink plenty of water/stay hydrated
• Be mindful of extreme temperatures/environments
• Make sure your child takes his / her daily medications as prescribed
• Find a qualified, culturally sensitive physician 

My daughter is a living example of maintaining normalcy with sickle cell anemia. It is possible to both, live a full life and have sickle cell anemia.