After learning their son would have a bilateral cleft lip and palate, a couple decided to share his story to raise awareness about the condition. By doing so, they’ve learned that sometimes people can be cruel. But a random act of kindness helped the family realize how supportive people truly are.
“The generosity of a complete stranger restored our faith in humanity,” Sara Heller, 26, told TODAY via email. “Being Brody's parent has taught me that people care. Strangers all over the country want to hear his story, and they want to pray for him.”
When Heller was 24 weeks pregnant, an ultrasound revealed that Brody had a cleft lip and palate. After struggling with initial shock, Heller and partner Chris Eidam, 30, of Omaha, Nebraska, realized their son looked beautiful and planned to share as many pictures of him as possible.
“It is OK to be proud of your baby no matter the circumstances," Heller said. “We wanted to change what ultrasound/newborn/first year pictures on our Facebook/Instagram accounts looked like. We wanted to spread awareness of cleft lips and palates."
Experts remain unsure what causes cleft lips and palates, which occurs when the tissues don't fuse during pregnancy. The Centers for Disease Control and Prevention estimates that 2,650 babies are born with a cleft palate and 4,440 babies are born with a cleft lip with or without the cleft palate. Children with clefts normally undergo a series of surgeries to repair their lips and palates. And, they often need therapy to learn to talk and eat.
While Heller and Eidam hoped that sharing photos would normalize cleft lips and palates, this means sometimes people say unkind things about him. A few days before New Year’s Eve, a person on Instagram asked Heller “What’s wrong with his face?” Even though she knew that someone would eventually ask about Brody, she felt shocked.
“I wasn’t prepared to defend my 3-month-old and why he looks ‘different’ from other babies. I decided to educate rather than create a confrontation because that is what I want Brody to do in the future,” she said. “I will want him to educate, to be an advocate for younger cleft kids who don't have their own voice yet."
Just a few hours later, Heller was at dinner with Brody and some of her girlfriends when the server delivered what looked like a folded napkin to Heller. She thought someone sent her a note, but when she opened it she felt stunned. There was a check for $1,000 with the note in the memo line, “For the beautiful baby.”
“Tears fell from my eyes immediately and the happiness my heart felt is indescribable,” she said.
The check helped Heller and Eidam pay some of Brody’s medical bills. On Jan. 3 Brody had lip surgery, his second procedure, and seems to be healing well. Because of the cleft lip and palate, eating remains a challenge so he relies on a gastrointestinal tube, aka a g-tube, to receive nutrition. When Brody’s between nine and 12 months old, he’ll have another surgery to repair his palate.
Heller says that the emotional support from people from all over reminds her and her family of the good even in the face of criticism.
“This experience has shown us just how strong the cleft community is. We've been contacted by people all over the country … they are praying for us and asking us to reach out if we need anything.”