You just found out your child has sickle cell disease. Now what?

First things first: Take a deep breath. Finding out your child has sickle cell disease can be overwhelming. It’s not what you planned or hoped for, and while it changes things, it doesn’t end anything.

This diagnosis may bring a wave of guilt, fear, and grief. That’s completely natural. But here’s the truth: Feeling guilty won’t change the reality of your child’s condition. Sickle cell disease is inherited, and if you and your partner carry the sickle cell trait, this outcome was always a possibility — even if no one told you that. The best way to direct your energy is to support your child, not punish yourself.

The first few years of life are often relatively stable for children with sickle cell. This is thanks to fetal hemoglobin, which offers some protection against sickling. But as your child grows, they will begin producing more adult hemoglobin, and the risk of painful episodes and complications increases.

Rather than being lulled into a false sense of security, use this time wisely. This is your window to become educated, build routines, and prepare for what’s ahead. Learn as much as you can about the condition — its triggers, treatments, and warning signs. Develop a strong relationship with your child’s hematology team, other sickle cell patients, and parents of children with the disease. Stay one step ahead.

Recommended Reading

October 10, 2024 News by Margarida Maia, PhD

Access to food, transportation key for sickle cell children: Study

You don’t need a medical degree, but you do need knowledge. Become an expert on your child’s care. Know the signs of a crisis, how to manage pain, and what to do in an emergency. Learn how infections affect children with sickle cell, why hydration is critical, and why a fever is never “just a fever.”

Don’t get complacent if your child seems healthy. Just because things are calm now doesn’t mean you won’t face challenges later. Equip yourself so you’re not caught off guard.

Teach advocacy from an early age

As your child grows, they will need to learn how to advocate for themselves. That doesn’t mean they must become a spokesperson for the disease (unless they choose to), but they should be able to explain their condition to teachers, doctors, and peers when needed.

Racism is, unfortunately, a reality in healthcare. Many sickle cell patients — especially Black patients — are not believed when they describe their pain or symptoms. Your child needs to know how to navigate that landscape with confidence and clarity.

This won’t look the same for every child. Some may have additional challenges, such as learning disabilities or neurodiverse needs, which can occur as complications of sickle cell. Advocacy should be suited to your child’s individual capabilities.

Love without limits

Your child’s life has the same value today as it did yesterday. A sickle cell diagnosis does not diminish their worth. They are not “less than,” and they shouldn’t be loved or favored less than any siblings or peers.

They can live a joyful, full, and flourishing life — but that starts with you creating the right environment. Ensure they have access to good healthcare, a supportive home, a solid education, and opportunities to pursue their passions. Don’t impose limits based on your fear or guilt. Support them in dreaming big and encourage them to pursue those dreams with wisdom and resilience.

Learn to navigate emotional fallout

If you knew your genotype before conceiving your child, the emotional burden can feel even heavier. At some point, your child may question your decisions. They might express pain, anger, or blame. These moments are difficult, but silencing them is not the answer. Allow space for tough conversations. Let your children feel safe in expressing their emotions, even when they hurt.

Sibling dynamics can become strained when one child has sickle cell disease. It’s not uncommon for siblings to feel resentment or perceive the child with sickle cell as attention-seeking, leading to fractured relationships — often without the parents even realizing it. The best way to prevent this is to educate all of your children early on, helping them understand the condition and the reasons behind the extra care their sibling may need.

Build an emotionally healthy family dynamic. Reassure them that you are in this together, and commit to walking this journey with openness and grace.

Offer hope

There’s no denying that sickle cell is hard, bringing pain, hospitalizations, and interruptions to daily life. But it doesn’t have to be a death sentence, and it should never be a life sentence of low expectations.

Far too often, society limits those with chronic illnesses, especially sickle cell. Your job is to be your child’s biggest cheerleader. Affirm that they can achieve great things, that they are not broken, and that their diagnosis does not define them.

This journey will have highs and lows. But it can also be filled with strength, joy, growth, and purpose. Your incredible, resilient child deserves nothing less.

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.