There is so much information parents are bombarded with as soon as they find out in their anatomy ultrasound that their child has a cleft. While a craniofacial team is so helpful and important, many parents seek support from those who are going through this same experience or have gone through it already.
The most common question I am asked from parents is:
What’s next? 
Many parents turn to Facebook and read hours and hours of posts, trying to figure out the road that lies ahead for their little one.
If you are feeling alone, or this sounds familiar to you…
I wanted to put together a list of good resources and support groups for cleft families.
According to a study, most of the discussion in support groups surround topics such as maintaining dental health and how to care for children before and after surgeries.
Here is a list of some great support groups and resources:
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ACPA Family Services: The ACPA has real patients write their stories on the website.
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Cleft Palate Mom Support Facebook Group: created by a mom of a cleft baby. The administrators write:
“a group for support of new moms, or seasoned moms, or grandparents with a child, or grandchild with a Cleft Lip/Palate. We answer questions, and just are here for the love.”
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Cleft & Craniofacial Connection Facebook Group: all friends and family who are interested in gaining information, support, and creating public awareness are welcome here!
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The Cleft Lip & Palate Foundation of Smiles: There is a tremendous amount of information and support you can gain from this website. Plus, it has really cute cleft products you can purchase!
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Cleft Mom Support Facebook Group: this is a support group for parents/adoptive parents/guardians and grandparents of children born with a cleft lip and/or palate. This support group is ADORABLE with how they have a Surgery and Buddy List, where you can write when your child is having surgery. Every day, they post who is having surgery so love and support can be sent your way!
I hope this list helps, and you can find comfort in knowing YOU ARE NOT ALONE!
Reading stories of what others have gone through gives hope, education and most importantly, connection.
Thank you for reading!
Great List. I’m assuming it is overwhelming and great to know about all these resources!