Team Graycen

Congenital Heart Defects (CHD) don’t just affect the diagnosed child, they impact the entire family. And siblings often carry a quiet weight that’s hard to name.

💔 The Silent Strength of Siblings 💔

While the world focuses on the child with the heart defect…
there’s another story unfolding quietly in the background: the siblings.

The brothers and sisters who wait at home while mom and dad live at the hospital.
Who celebrate birthdays on FaceTime.
Who whisper prayers during surgeries.
Who carry big feelings in small hearts, worry, fear, confusion… sometimes even guilt.

They miss their parents.
They miss their sibling.
They miss normal.

Congenital Heart Defects (CHD) don’t just affect the diagnosed child, they impact the entire family. And siblings often carry a quiet weight that’s hard to name.

🧠 What Siblings of CHD Warriors May Feel:
• Anxiety about their sibling’s survival
• Guilt for being healthy
• Resentment for lack of attention
• Confusion from frequent separations
• Pressure to “be strong” or not complain
• Loneliness or emotional withdrawal

❤️ What Parents & Caregivers Can Do:
• Keep communication open: Age-appropriate honesty builds trust. Let them ask questions and name their feelings.
• Carve out one-on-one time: Even 10 minutes of undivided attention can ease emotional isolation.
• Involve them: Let them draw pictures for their sibling, help pack hospital bags, or FaceTime during rounds.
• Reassure without dismissing: “It’s okay to feel scared. I feel that too sometimes. But we’re doing this together.”
• Encourage expression: Art, journaling, or play therapy can help them process big emotions.
• Create predictability: Keep routines stable at home when possible. Consistency brings comfort.
• Celebrate their resilience: Remind them they’re not forgotten, they’re heroes too.

To the parents balancing it all,
To the siblings waiting quietly in the wings,
To the caregivers holding everyone together,

You’re doing the best you can in the hardest of circumstances. And that’s more than enough. 💗

Graycen met with Cardiology yesterday! These appointments can be rough. He knows what’s coming. And even though he’s been through much more than a routine check it’s never fun for him. So before his appointment we grabbed Chick-Fil-A, and of course he got to eat the ice cream first!
So the worst part of the appointments is the testing beforehand. He hates Echos but the EKG even more. With that being said we worked through his fears yesterday and I was able to sneak a smile. Oh the faces ive made to try and get a grin lol So so thankful for the staff who is patient with him whike we work to calm him down. We are still learning to navigate through his Medical PTSD and what can help him best.
With that being said… everything is doing good! He has had a few very low heart rates at home so we did have him on a 3 day monitor. Results came back last week and while the highs and lows have a big range they are (for the most part) “normal” for him and there is no need for intervention still at this time.
God is good!

❤️💙🫀

It’s Heart Month! ♥️💙🫀

Graycen was born with four different “conditions” with his heart. Dextrocardia, pulmonary Atresia, VSD and Double Outlet Right Ventricle. As the month progresses we will talk more about them! Each one with its own set of challenges. He’s had 3 open heart surgeries and countless other procedures. His little body has been through so much and he is such a Warrior. We hope to bring awareness and knowledge to CHD and shine light on our amazing heart warriors!

Did you know:
- CHDs are the most common birth defects. CHDs occur in almost 1% of births.
- An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
- Nearly 40,000 infants in the U.S. are born each year with CHDs.
- CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.
- Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
- Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.