DiGeorge Syndrome, also known as 22q11.2 Deletion Syndrome, is a genetic condition caused by a small missing piece of chromosome 22. While it affects each child differently, many children with 22q face a mix of challenges including congenital heart defects, immune system issues, developmental delays, feeding difficulties, and behavioral or learning differences.
Families caring for a child with 22q often navigate a complex web of medical appointments, therapy sessions, school accommodations, and emotional needs. In this journey, siblings can sometimes feel lost in the shuffle—and parents may find themselves needing to advocate strongly in clinical settings to ensure their child’s unique needs are understood and addressed.
At Panassea, we support the entire family.
Supporting Siblings in Complex Care Families
Siblings of children with 22q11.2 Deletion Syndrome often grow up with extra responsibilities, heightened empathy, and an early understanding of hospitals, therapy sessions, and unpredictability. While many siblings develop resilience and compassion, they may also experience confusion, jealousy, guilt, or loneliness.
Common Feelings Among Siblings
- Jealousy: “Why does my brother get all the attention?”
- Guilt: “I’m healthy, but they’re not—should I feel bad?”
- Fear: “What if they have to go back to the hospital?”
- Pressure to Be Perfect: “I don’t want to add stress to my parents.”
- Protectiveness: “I need to stand up for them.”
- Confusion: “What does 22q mean, exactly?”
These are all valid responses. Creating a space where siblings feel heard, valued, and involved can ease these feelings and strengthen family bonds.
Tips to Support Siblings of Children with 22q
🗣️ Talk Openly
Use age-appropriate language to explain the diagnosis. Include the name “22q11.2 Deletion Syndrome” so they can hear it without fear. Answer their questions with honesty, even when the answer is “We’re still figuring that out.”
🎨 Make Space for Their Emotions
Let them express sadness, anger, or worry without guilt. Say things like, “It’s okay to feel that way. I feel that way sometimes too.”
📚 Share Books or Videos About Siblings of Children with Disabilities
Look for stories where kids see themselves reflected—this helps normalize their experience.
📅 Create One-on-One Time
Even 10 minutes a day of undivided attention can make a big difference. Play a game, take a walk, or just listen.
👧 Involve Them (But Don’t Burden Them)
Let siblings help in ways that empower them—like fetching a toy or helping pack a hospital bag—but avoid making them responsible for caregiving.
🎉 Celebrate Their Achievements, Too
From school art shows to losing a tooth, every sibling deserves recognition and celebration.
“Once we created a sibling calendar where each of our kids had their own ‘special day’ every month, we noticed fewer meltdowns and more connection. They just needed to know they mattered, too.”
– Parent of a child with 22q and two siblings
Final Thoughts for Families
Living with 22q11.2 Deletion Syndrome brings complexity—but also connection. Whether you’re making therapy appointments, managing heart conditions, or supporting your child’s IEP, your love and advocacy matter every step of the way.
And while your child’s medical journey is at the forefront, remember that siblings deserve a spotlight too. By carving out moments of individual attention and creating space for open conversations, you nurture the whole family—not just the diagnosis.
At Panassea, we’re here to support every voice in your home—from the parent advocating in clinical rooms, to the sibling asking quiet questions, to the child with 22q navigating the world in their own beautiful way.
📘 Explore More Resources
Download our free caregiver guides:
- Understanding 22q11.2 Deletion Syndrome
- Heart, Immunity, and Feeding Support
🎥 Upcoming Webinars
✔ Sibling Support for Families of Medically Complex Children
✔ Building Confidence in Medical Advocacy
✔ 22q11.2: Beyond the Diagnosis
📩 Need help preparing for an appointment or supporting your other children?
— we’re here to help you find clarity, connection, and care.
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