A Word from the Founders

Today, we’re kicking off our new blog series with a post from Cleftopedia’s cofounders, Dara Smith and Danielle Zierer, sharing the story of how Cleftopedia got started and what it’s all about.

Dara and Danielle met through an awesome support group on Facebook called Cleft Mom Support, which they both found while they were still pregnant with their cleft-affected children. Although Danielle and Dara live on opposites sides of the country, the experiences they came across were almost identical, which created an immediate bond between the two. As their friendship developed, they quickly found that their babies had nearly the same exact cleft (bilateral cleft lip and palate) and they were born only 5 days apart! Amongst the many things they found they had in common, one of the biggest was unfortunately how difficult it was to choose a cleft team. Danielle points out, “There’s a lot of information out there, in a lot of different places, and yet none of it is very detailed or particularly helpful beyond offering a simple listing of teams that exist.” “Don’t get me wrong,” Dara adds, “there are a ton of resources out there for AFTER you have your baby, but there wasn’t anything for soon to be mommies of a cleft baby. The amount of research that the both of us had to do was so overwhelming that it took us the remainder of our pregnancies to get a, somewhat, good grasp on what direction we were going to go with our babies.”

One day Dara and Danielle got to talking and decided they wanted to do something that would help future moms in the same position. “We talked about how it would have been incredibly helpful to have had a more detailed list of cleft teams that clearly outlined all of the things we cleft parents must ask about, like their pre-surgical approach and post-surgical restrictions, along with access to reviews from other parents with before and after pictures would have been amazing,” recalls Danielle. It was from this discussion that the idea of Cleftopedia was born. Danielle and Dara then sprang into action mode, reaching out to their extensive network of cleft families to gather input in order to create the initial team listing, complete with all of the additional details they discussed including. The response was astounding – over 200 cleft families participated in the initial data collection
alone.

What started out as a more thorough team listing then grew into a full cleft resource intended to help out new cleft families as they begin their journey. “It was originally going to start out as a document that we were going to post onto the Facebook support group, but there was just too much information so it transformed into a full website,” explains Dara. “The site is unique because it’s based completely on the personal experiences of hundreds of cleft mommies, and includes information on different bottles and sippy cups, thorough descriptions of the various pre-surgical techniques with real life examples and photos of results, and of course it has the more detailed cleft team listing, which is the true gem of the site,” explains Danielle of the website when it launched in March of 2014.

And it hasn’t stopped there. As it’s grown, Dara and Danielle have continued to expand the site’s offerings, keeping in line with their original mission to help new cleft parents. Today, you will also find pages on scar creams with parent testimonials, a Cleft Shop featuring cleft-related merchandise made almost exclusively by fellow cleft moms, and now the blog series too! And if that’s not enough, they have even more plans in the works for Cleftopedia, so you’ll have to stop back often to see what’s next.

Cleftopedia’s reach of support also goes beyond its physical webpage: Dara and Danielle make it a point to identify opportunities to partner and collaborate with other cleft organizations. In their first year alone, they’ve become listed as a parent resource on many different cleft sites, including the Cleft Palate Foundation, the Mia Moo Fund, and Smile Train. They’ve also partnered with several fantastic cleft charities such as Cleft Kids, Inc., and the newly launched Cleft Connect.

“All I know is…if I found this site while I was pregnant with Isla, I would have been one happy camper! So I hope that Cleftopedia will be able to do that for any new cleft mommy that stumbles across it.” ~ Dara Smith

“I am so proud to have created such a thorough site for new mommies, and it feels amazing to be able to help so many others as they embark on their own cleft journeys.” ~ Danielle Zierer

And, of course, Cleftopedia would not exist without the amazing cleft families and supporters that have shared their experiences or contributed in some way. So for that, Dara and Danielle agree they are forever grateful.

To stay up to date on what’s happening at Cleftopedia, be sure to follow the site’s Facebook page.