Parents of Baby With Cleft Palate Seek to Spread Awareness and Acceptance
On New Year’s Eve, new mom Sara Heller shared a photo on Instagram of her son, Brody, who has a cleft lip and palate, and someone actually commented, “What’s wrong with his face?”. Heller, of course, was devastated, according to Today. “I wasn’t prepared to defend my 3-month-old and why he looks ‘different’ from other babies,” the 26-year-old told the media outlet.
That difference is still something of a medical mystery, but about 2,650 babies are born in the U.S. each year with cleft palates, and 4,440 are born with cleft lips, according to the Centers for Disease Control. Brody happens to have both. This means he has and will have to undergo surgeries to correct the birth defects, which cause the lip and the roof of the mouth to be split. Such babies may also have problems eating and speaking, and can be prone to getting ear infections, says the CDC.
Despite the initial shock of finding out about Brody’s condition during an ultrasound, Heller and her husband, Chris Eidam, 30, find their beautiful and were eager to share pictures of him on social media. They knew he looked different, but Heller wasn’t expecting such a rude comment.
A photo posted by Sara Heller (@saheller) on Jan 12, 2017 at 9:01am PST
She tells Today that her faith in humanity was restored, though, while the family of three — along with some of Heller’s girlfriends — were out to dinner one night recently. Their server handed the mom a piece of paper, says Today, which she assumed was a note. Incredibly, it was a check for $1,000 for the family. The note said, “For the beautiful baby.”
“Tears fell from my eyes immediately, and the happiness my heart felt is indescribable,” she told Today. She and Eidam were able to use the money to help pay for Brody’s surgery, a lip procedure he had done on Jan. 3. When the baby is between nine and 12 months old, he’ll have to have palate-repair surgery. In the meantime, because his feeding is affected, he gets his nutrition through a gastrointestinal tube. Despite his condition, Brody’s bright smile remains intact.
And now, so do the smiles of his parents. Heller says she would rather educate critics of her son’s looks than clap back against them. “I decided to educate rather than create a confrontation because that is what I want Brody to do in the future,” she said, referring to the Instagram negativity. “I will want him to educate — to be an advocate for younger cleft kids who don’t have their own voice yet.”
A photo posted by Sara Heller (@saheller) on Jul 26, 2016 at 9:27am PDT
Heller tells Today she has found great comfort in the “cleft community.” She says, “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.”
She tells Today that despite her son’s hardships, “It is OK to be proud of your baby no matter the circumstances. 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.”
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