Four Clefts, One Family

Alexis GiannattasioFamily Stories, School-Aged Child

After receiving cleft diagnoses for four out of five children, Jane Stedman and her family decided to live a life that gives back.

Ten years ago, our first child, Eden, was born with a cleft of her soft palate.  Being that we had zero family history, and it was undetectable on ultrasound, we were shocked.  As first-time parents, we already had a lot to learn, and the cleft certainly compounded that.  It required that our learning curve be exceptionally quick, we advocate for our daughter, and ask countless questions that we were (almost) too scared to want the answers to.

Now we are parents to five children, four of which have clefts of varying degrees.  We’ve been through more surgeries, procedures, doctor’s visits, and therapy visits than I can count.

Here’s the thing – we’re not alone.  The care plan for children with clefts can vary widely, but I’ve found that two things are universal.  First, all parents worry – especially parents of children with birth defects.  Second, a cleft journey is far-reaching; it impacts a whole family.

While we had worked almost exclusively with ACPA Approved Teams, our time with the UNC Team continues to be the most impactful in our cleft journey.  It was the first time that we had a full, comprehensive review of each child’s health – and all of the children together – with a whole battery of professionals.  It was the first time our children had been evaluated not only by ENT and Plastic Surgery, but also Speech-Language Pathology, Dentistry, Orthodontics, Audiology, and Psychology – all at the same time.  It was also under the care of these physicians, that we were finally able to obtain insurance coverage for genetic testing, and we discovered the cause of the clefts in our four children.  Words cannot fully express what a tremendous blessing it was to have their help and guidance in putting together the entire puzzle of the cleft diagnosis and journey.

We don’t understand why our children were born with clefts, but we know that it has a greater purpose in our lives.  We resolved that we would help other families and children on their cleft journeys and teach our children to extend kindness to others, no matter their abilities.  On tough days, we set our minds and hearts on the equity of knowledge, experience, and compassion that this journey has given us.

We’re beyond proud to share that, as Eden has started her path to the Girl Scout Bronze Award, she chose to put cleft families at the heart and center of her project.   She collected items from family, friends, and neighbors to include in special bags for families that visit the cleft team at our local children’s hospital in Colorado Springs.  The items are simple – crayons, coloring books, snacks, pacifiers, books – but we know from first-hand experience that they mean so much.  Cleft Team visits are often long, and sometimes frustrating or scary.

Eden hopes that this small gift can bring brighten the day of each recipient, while also sharing with the community our family’s experience with one of the most common birth defects.  It’s extra special that she kicked off her project during July 2018 – Cleft & Craniofacial Awareness Month.  We know that this is a small gesture, but we look forward to a lifetime of “giving back.”