Growing up with sickle cell disease: What my parents did right
Fact-checked by So, your child has been diagnosed with sickle cell disease. What now?
Grieve, but don’t let it paralyze you. The greatest risk isn’t the grief itself, but how it can freeze parents in fear, denial, or helplessness. Because raising a child with sickle cell, however unfair, means you need to step up as a parent who is ready to learn, advocate, and adapt.
While you cannot undo the diagnosis, you can decide exactly what kind of support your child will have from this moment forward.
As an adult living with sickle cell, I’ve seen firsthand what that looks like. My parents moved past their initial shock to become knowledgeable, dependable advocates whose support carried me through my toughest periods. In this article, I’ll share the specific things they did that helped me most.
Learn your child’s pain language, and track it
In the early years, you must learn how your child expresses pain. Learning your child’s “pain language” allows you to identify problems early. I wasn’t diagnosed at birth; it wasn’t until my first crisis at 18 months that my parents’ vigilance saved me. I couldn’t articulate what was wrong, but they saw something was “off” and took immediate action.
Sickle cell symptoms in toddlers may manifest differently than you’d expect. Since they can’t communicate well yet, those symptoms can show up as fussiness, limping, refusing to use a limb, or swelling of the hands and feet.
That last symptom is worth learning the name for, because it’s the first sign many infants have: dactylitis, where sickled cells block the small vessels of the hands and feet. Saying that word on the phone can change how quickly you get seen.
You must become an expert in tracking subtle changes such as:
- behavioral shifts
- unusual fatigue
- irritability
- reduced appetite
- a sudden desire to be held more often
When I was growing up, we used a simple notebook to track symptoms and list questions for appointments. Today, shared digital notes or a tracking app do the same job.
Whatever you use, track temperature and treat that as the most important column: sickle cell can damage the spleen, and many children effectively lose spleen function early in life. The spleen is an immune organ that helps protect the body against infections, which is why a fever is a same-day phone call rather than a wait-and-see situation.
Ask your team for the exact temperature at which they want to hear from you, write it on a card in your wallet next to their after-hours number, and keep a thermometer in the bag you carry every day.
Control triggers where you can
Getting cold, dehydrated, or short on oxygen can worsen sickling and trigger complications, so you want to focus on your child’s water intake and warmth.
Tips for reducing these risks include:
- asking your team for a daily fluid target for your child’s weight
- keeping a marked bottle on the counter so the target is visible
- being mindful of situations that could leave your child cold or dehydrated, such as prolonged cold-water play, air conditioning blowing onto wet skin, or a long car journey without access to drinks.
You can’t control the disease, but you can, to an extent, control the environment and what is going into your child. Don’t take that power for granted!
Settle only on a healthcare team you trust
Another vital step is building a strong relationship with your child’s healthcare team. These professionals will become a fixture in your lives, but this connection shouldn’t stop with you; as your child grows, encourage them to build their own trust with providers.
Your child needs trusted adults who understand the disease and can answer difficult questions. They need to know that if they aren’t comfortable discussing something with you, the medical team is a safe and supportive secondary space.
If you or your child do not trust their sickle cell team, it could be wise to seek a new team as soon as possible, as the ability to communicate honestly is of the utmost importance. If you’re seeking a new team, consider asking support groups in your region who they have trusted most and check the providers’ reviews online.
Build your child’s emotional resilience
One of the hardest parts of raising a child with sickle cell is caring for their mental health when it feels like the world is against them.
Because sickle cell is inherited and you are the ones overseeing their treatment, children may sometimes direct frustration or blame toward you. While this is painful, know that it’s not uncommon. To be proactive, it could be a good idea to seek family therapy before there are problems, so you already have a trusted person who knows your family’s story and can help you navigate difficult moments when they arise.
It is also important to be realistic. Sickle cell disease affects every aspect of life — education, work, relationships, and emotional well-being. Your role is not to shield your child from every difficulty, but to help them develop the resilience to face those realities with confidence.
Also important is to not place unnecessary limitations on them.
Train your child to lead their sickle cell care
Encourage curiosity from an early age. A child who understands their condition is far better equipped to manage it as an adult. One day, they will have to navigate this journey without you beside them. The education you provide now will pay dividends for the rest of their life.
Involve your child in their care in age-appropriate ways as early as possible. Help them understand their medications, complication triggers, and medical history. Self-advocacy doesn’t appear overnight; it is built gradually through shared knowledge and experience.
Try practice exercises, especially during the teenage years. Give your child a scenario and ask them what decision they would make and why.
One practice scenario that I recommend has you, the parent, playing the role of a stern doctor who is not convinced of their pain and the child playing themselves and needing to explain their illness, care plan, and pain levels to the doctor. The more you reinforce practicing with your child, the better prepared they will be when a scenario presents itself in real life.
Educate your child’s school
School can be particularly difficult for your child’s mental health because it’s the place your child will be most separated from your protection.
Even if educators have heard of sickle cell, their understanding is often limited. You will need to educate them, advocate for reasonable adjustments, and ensure your child isn’t pushed into situations that may increase the risk of hospitalization.
It’s also important that the teacher communicates to you when they notice your child’s performance is declining. Silent cerebral infarcts are common in sickle cell and often cause no obvious symptoms, but they can affect learning and memory. A slide in schoolwork can be an important clue that warrants investigation. If you notice a significant or persistent change, let your child’s healthcare team know.
And of course there are classmates. Children can be unkind to those perceived as “different.” Rather than waiting for bullying to surface, educate the teacher on ways that children with sickle cell are often bullied so they know what to watch out for.
Parenting a child with sickle cell may feel impossible right now, but with the right support, your child can live a full and meaningful life. Because sickle cell is often misunderstood, people will underestimate what your child is capable of. Be careful not to adopt those low expectations yourself. Remove the glass ceilings, challenge the stigma, and protect your child from those who seek to define them by their diagnosis.
The road ahead may not be the one you expected, but it is still a road filled with possibility. Your child is far more than their diagnosis, and your job is to equip them to meet the world on their own terms.
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.
