The Cleft Community Could Use a Cuddle. Krista is There

Krista Pietersma, of Texas, is the mother of a child with a cleft and the founder of Cuddles for Clefts, a nonprofit that gives donors the opportunity to send gift boxes, or “Cuddle Packs”, to children in America and abroad about to undergo cleft surgery. Below, she shares her family’s cleft journey and how she turned her initial angst and anxiety into lasting comfort and community for cleft-affected families around the world.

I’ll never forget leaving the doctor’s office that day in 2014. The last thing he said to me was that I would need to pick a strong name for my son. We were in terrified; in shock. We didn’t have a frame of reference or anywhere to turn to really understand what our unborn child’s cleft diagnosis meant, so I reached out to one of my moms’ groups on social media to see if anyone had anything that might help us. My first lifeline came when a woman whose sister had a daughter with a cleft reached out to me and put us in touch.

This woman’s daughter is only a few months older than my son. When I was still pregnant, she let me know that my sadness and fears were valid and that once my sweet little guy was in my arms, those feelings would disappear. She was right. She became my support system and has since shared insights from her family’s journey, checked on us during my son’s recoveries, and even passed on specialized valves for bottles when she no longer needed them. The first year or two of a cleft journey can be all-consuming. Sometimes you wonder if there is light at the end of the tunnel, but there is, and this woman helped me see it.

Because I was so blessed to have this woman’s help and wisdom, I knew I, too, needed to be there for others. My first opportunity came before my son was born, when I started volunteering for an organization that sent care packages to children undergoing cleft surgeries. Each package included a stuffed animal with a hand-stitched scar to match the one the child would have post-op, plus a few other toys and comfort items. When my son was born, he received one with a bib, an outfit, and a stuffed bear with a cleft.

While he was too young to understand the meaning behind the package, it meant the world to us to know someone was thinking of him. As he got bigger, he bonded with that bear, and it has since become his companion through multiple surgeries. It’s still a comfort to him today.

When this original organization decided to dissolve in 2016, I acutely felt the pain of the families who had come to rely on it; I couldn’t bear the thought of all of these babies and new parents now going through this journey alone. So I took a chance.

From Strength to Strength and Smile to Smile

Thankfully, I learned a lot from the other organization and was able to build on my experiences there to make Cuddles for Clefts stronger. There are so many different types of clefts and I wanted to make sure that the items in each Cuddle Pack could be used for all of them. That’s how I picked our “Every Smile Has a Story” onesie and the book Shining Scars by Krystian Leonard — both can apply to any child or person who learns to shine and celebrate their uniqueness. We often mention that it’s not the items inside the Cuddle Pack that matter, but the message behind it: You and your child are never alone, and what makes you different is what makes you most beautiful.

Our message clearly resonated. Cuddles for Clefts soon took off, and I have been blessed to see how it has created bonds across the global cleft community. Many Cuddle Packs are sponsored by families who are affected by a cleft diagnosis in some way and want to send a care package to a child whose treatment date or birthdate matches their own child’s. Very often, families receive a package themselves and want to pay it forward by supporting another family going through the same thing. The orders kept coming in.

This project has always been a labor of love, but homeschooling a young family while running all aspects of a nonprofit while hand-stitching an ever-growing number of stuffed animals soon proved untenable. Thankfully, I was soon blessed to bring on two other wonderful moms with cleft-affected children to help make everything happen. It’s definitely a team effort, though we continue to offer a small selection of other stuffed animals that I hand stitch and I do still pack and ship every single package myself.

Growing the Village

The first thing you learn about being part of the cleft community is we’re all in this together, and that’s why, when Smile Train reached out to us about forming a partnership, we were eager to jump aboard. With a Smile Train Cuddle Pack, everybody wins — children with clefts in need around the world get to know another family is thinking of them as they go in for their free surgery, and donors’ families get to make a connection with someone they would likely never meet otherwise. It truly takes a village, and I’m thrilled that our partnership is helping to create a global cleft village every day.

Our partnership with Smile Train is only one of the many exciting ways we have been growing lately! I’ll never forget that lonely feeling that follows the initial cleft diagnosis. That’s why we recently started offering special boxes for doctors and hospitals to give their patients receiving a cleft diagnosis. Our hope is that through these boxes, we can reach and welcome these families from the very beginning.

We also recently launched a partnership with CozeeCoo, which is an incredible garment that provides a more comfortable recovery than the post-op arm restraints currently in use.

The Cleft Journey Ahead

As Cuddles for Clefts has grown, so has my son. Now seven, his cleft is a part of him, but it does not define him; to be totally honest, he doesn’t even notice it. Sure, he has had far more surgeries and therapies in his short life than most other children will ever have, but he is one of the strongest little guys I know, and nothing will get in his way. Right now, we are blessed to be in a break period from those initial surgeries, but are gearing up for the orthodontic and bone graft part of the journey next. It’s a little nerve-wracking, and I find myself not knowing what to expect, but I know we have a global community surrounding us that we can lean on and learn from.

Though so much has changed since my family first became part of the cleft community, our goal has not: In all I do, I aim to continue to be a support and comfort to other families walking a cleft journey. We wouldn’t be where we are today without this incredible community behind us. We are one great team, and I can’t wait to see where this journey takes us.

Want to use your passions to save lives and give comfort to cleft-affected families the world over?

Learn more about Smile Train’s Community programs.