Does Your Sibling Have a Cleft? This is for You

You know what it’s like to be jealous of your brother for getting to go to the hospital: All the attention. Unlimited TV and ice cream.

You were always prepared to jump in and save your sister from bullies — or, as an adult, you sometimes lay awake at night agonizing over the times you didn’t. You wonder why your body is the way it is — and you’ve always been healthy. You keep a mental list of questions you always wanted to ask your sibling but were never sure if it was okay.

If any or all of this sounds familiar, you are not alone. The struggles of having a sibling with a cleft are real and deserve to be named, addressed, and celebrated.

That truth animated “Finding Strength and Connection Through Sibling Experiences,” a candid, tear-filled discussion at Cleft Con Orlando between Autumn Baker, whose older sister, Allie, and brother Adam each have a cleft, and Isaac Ballou, whose younger sister, Iva, has a cleft and serves as Smile Train’s Manager of Cleft Community Development.

If that sounds like a conversation you’ve been waiting to have your whole life, don’t worry. We’ve compiled Autumn and Isaac’s wisdom and advice into this first-of-its-kind guide by and for siblings of people with clefts. No matter your age or the age gap between you and your sibling or what kind of cleft your sibling has, we promise there’s something here for you.

And if you want to join in the discussion live next time, be sure to register for an upcoming Cleft Con! The next virtual Global Cleft Con will be Saturday, November 8, 2025, and the next in-person edition will be held in Arizona in July 2026.

On Feeling Guilt or Resentment

Feelings of guilt or resentment toward your sibling with a cleft are natural and okay. Until very recently, most families did not have a space like Cleft Con to work these feelings out; as a result, many siblings look back on their childhoods and feel guilty over things they said or didn’t say.  

The best way to ease these feelings is to talk about them with your sibling.

Autumn shared that she has struggled a lot with guilt because, as the baby of the family, she didn’t really understand what Allie and Adam were going through.  

She shared a memory of asking Allie why she always put makeup on before going to the beach. “I told her, ‘Oh, you’re beautiful, you don’t need it.’ I didn’t understand I was only making matters worse. A lot of things like that started clicking for me recently.”

As an older brother, Isaac had the opposite experience. He always saw himself as his sister’s defender and intervened when she was being bullied. But the experience led what he calls “undiagnosed anger from trying to be a protector…. And it was really hard not to carry that on to other areas.”

For him, the solution was to step back and let Iva come into her own. It worked.

On How Parents Can Foster Healthy Relationships Amongst All of Their Children

The panelists emphasized that parents should not hold back. All children in the family need to be aware of everything that’s happening with their cleft-affected sibling, all the procedures they’re undergoing, all the care they’re receiving, even if they aren’t able to fully understand it yet. You don’t have to be part of the medical decision-making process to still feel involved. Inclusion matters. 

“That allows the person to feel like, ‘Hey, this is not just happening to one person in this family. This is happening to all of us,” Isaac said. “And the earlier we have a chance to include everybody, the better we can all move together, healthily, from a mental standpoint, because… we all know everything that goes into it.” 

You should also always feel free to check in with your brother or sister to see how they are doing, if they’re feeling more vulnerable than they’re letting on, if there’s anything they need from you. Make sure they know that you are a safe space for them.  

And if you haven’t done that yet, Autumn wants you to know that it’s never too late to start. Because she didn’t ask more questions as a child — “I was like, they look good, everything’s good” — she is set on making sure Adam and Allie know she is always there for them now. 

On How Being a Sibling of a Cleft-affected Person Shaped Them

Both Isaac and Autumn agreed that their siblings’ examples made them stronger mentally and emotionally. They taught them what you can accomplish if you are surrounded by love at home and refuse to listen to naysayers.

When Isaac talks about Iva being stronger than he is, some people laugh, but he is very serious. “Everybody sees the big, strong version of me, but my sister’s mental strength far exceeds mine. I could not have done half the things that she’s done,” he said. “If I would have had half of the courage, half of the mental strength that she has… I would be three times the person I am today.”

Autumn emphasized that Adam and Allie haven’t only taught her strength; they’ve also taught her grace: “They showed grace, and I’m like, ‘Wow. I should have been giving you grace, but you’re giving me grace. What? That does not make sense.”’

One other lesson Autumn has learned: It’s usually not the physical scars that people are hurting from the most. It’s the mental scars. 

Their Advice for Other Siblings of People with Clefts

Your journey matters. You might not have had the surgeries or know the pain or isolation, but you are part of your sibling’s journey and you are on your own, too. Own that and seek to empower yourself as much as your sibling.

Autumn didn’t realize that truth until this year, but now that she has, she said she’s “found so much peace” in it.

For Isaac, having one sibling with a cleft has made the whole cleft community feel like his brothers and sisters, and he is committed to standing up for them just like he did for Iva. “Whatever support you need, you now have a network,” he said. “Make sure you share that and ask questions of anybody.”