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Need help now? In an emergency, call 911.sicklesupport@notjustyou.ca

Your child was just diagnosed with sickle cell. Start here.

A first-year guide for parents and caregivers, from people who have been there.

By NotJustYou Editorial TeamDecember 4, 20252 min read

Maybe the call came after a newborn screen. Maybe it came after a hospital stay. Either way, take a breath. Children with sickle cell grow up to study, travel, fall in love and build careers, and you do not have to figure this out alone.

Your first steps

  • Get connected to a pediatric hematology clinic, and save the clinic’s after-hours number
  • Learn your child’s fever plan. With sickle cell, fever is an emergency
  • Ask about the daily antibiotic and the vaccines your child needs
  • Learn how to feel your child’s spleen and what swelling looks like
  • Ask your team about hydroxyurea and when it might be offered

Everyday habits that help

Water bottles everywhere. Layers in cold weather, and no swimming in cold water. Rest before your child is exhausted. Our cold weather guide and our guide to crises and the ER are worth reading now, before you need them.

At school

Meet the teacher before the year starts. Share the care plan, and ask for a water bottle at the desk, unlimited washroom breaks, indoor recess on very cold days and a plan for catching up after missed school.

Look after yourself too

Caregivers carry a quiet load: nights in hospital, missed work, guilt that is not yours to carry. As one caregiver in our community put it, you tend to go to a very dark place if you do not take care of your mental health.

Cells includes sessions just for caregivers, and registered Cells caregivers can access up to 24 subsidized therapy sessions. Our guide to caregiver burnout is for you.

Questions people ask

Many children with sickle cell grow up to live full, ambitious lives. Care has improved a lot, and new treatments keep arriving. Your hematology team will help you plan for your child’s specific needs.

Simply, and early. Children cope better when they understand what is happening in their bodies. Sickle Stories from warriors, like Lovejoy’s, show how much that understanding helps.

Usually, yes, with water breaks, rest and warmth. Ask your team about any limits for your child.

Sources

  • SickKids, AboutKidsHealth: sickle cell disease
  • Canadian Haemoglobinopathy Association, consensus guidelines

This article is general information, not medical advice. Talk to your own hematology team about your care. In an emergency, call 911.

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