Every three minutes, a baby is born with a cleft.
July is National Cleft and Craniofacial Awareness and Prevention Month. Around the world, many people have never met anyone with a cleft lip and/or palate – and fewer people still know much about clefts and the challenges that children and families affected by clefts can face.
Raising Cleft and Craniofacial Awareness With SmileTrain
Below is a story that highlights one such challenge; the impact a cleft can have on a baby’s ability to eat and, ultimately, survive. This story is shared by Smile Train, the world’s largest cleft-focused organization, which partners with local medical professionals around the world to support cleft treatment for those in need.
Atsede had never seen anyone with a cleft before she held her child for the first time. When she went to feed him by putting him to her breast, the milk came out of his nose. Every attempt at feeding Yohanes only made him cry harder. His cleft didn’t stop her from loving him, but it did taint those precious first moments with a sting of dread.
When her husband, Aschalew, entered the delivery room to meet his new son, she was shocked. So surprised by his son's cleft that he turned around and left. then spun and left. He had a relative with a cleft who had surgery to heal it a long time ago, but to do so took years of saving every penny. Aschalew thought his child didn’t have years to wait and couldn’t bear the thought of bonding with a child who could die.
While Atsede had only been a mother for a few moments, she already felt like a failure. Thankfully, the hospital staff were supportive, never leaving her side. They reassured her that treatment was possible and that there was a hospital in the next town, Yekatit 12, that would help her because they partnered with an organization called Smile Train.
Unlike other cleft organizations that fly outside doctors into countries to provide a short-term salve to a long-term, life-threatening health issue like cleft lips and palates, Smile Train believes that every person has the right to high-quality healthcare that is always available. That’s why they innovated a model that invests in the talents and passions of local healthcare teams, empowering them to offer world-class — and 100% free — cleft treatment in the communities they live in every day of the year. Smile Train calls it the “teach a man to fish” model, and since 1999, it has made life-changing cleft treatment possible for more than 1.5 million children around the world — more than every other charity combined.
When Atsede brought him to Yekatit 12 Hospital, a Smile Train-trained doctor evaluated Yohanes and determined cleft surgery would not be safe for him yet. Yohanes was severely underweight, and in order to safely undergo surgery, he needed to reach a healthy weight. The doctor estimated that, at Yohanes’ current pace, he would likely be healthy for surgery in about nine months. This worried Atesde. She was terrified that her baby wouldn’t make it that long, so the doctor showed her before-and-after surgery pictures of other patients, then introduced her to his team’s Smile Train-trained nutritional counselor. With help and guidance from the nutrition experts, Atsede learned how to feed Yohanes with a spoon.
Atsede left feeling reassured that her baby would be okay. However, even with the right tools, feeding Yohanes was the most difficult thing she had ever done.
Most of her family was supportive and assured her that Yohanes would live to receive surgery – and would be healthier and happier than she could imagine. But others disagreed and wanted to send him to an orphanage.
Atsede was torn. She loved her baby more than anything, but… he had difficulty sleeping and eating and always needed to be elevated so he didn’t choke. He cried all the time, and every scream broke her heart. Constant fights over his food running out pushed her marriage to the breaking point. Superstitious neighbors wrongly blamed her for Yohanes’s cleft, forcing her to stay indoors and hide his face any time visitors stopped by. Her husband spent most of his time working to avoid his son.
Even with all of this, she refused to give up her baby. With zero sleep and endless love, she and her son muscled through together, and not only did he make it to see his nine-month appointment, but the hospital staff also confirmed Yohanes had gained enough weight to safely receive the cleft surgery he desperately needed.
Atsede was full of hope and full of dread. One moment, she could see Yohanes’ bright future and the next, her anxiety spiked, and she feared he wouldn’t survive the surgery.
But the surgery went perfectly! When Atsede and Aschalew saw him wheeled out of the OR, they felt themselves breathe for the first time since he was born.
Yohanes recovered beautifully and was soon eating and drinking like every other baby. He is now a healthy four-year-old and a big brother.
The whole family is deeply grateful to Smile Train for giving their son a chance to not only survive but thrive. They look forward to the free Smile Train- sponsored speech therapy he will be starting soon - helping him to speak clearly and communicate confidently with his classmates.
Astede keeps a photo of Yohanes taken right after his surgery with her at all times as a reminder never to lose hope.
Looking for more information on Cleft and Crainiofacial awareness? You'll enjoy these:
- What Is Cleft Lip And Cleft Palate?
- The Importance Of Newborn Baby Tummy Time On Your Infant's Breathing
- 6 Tips For Safe Sleep For Baby
- What Is Down Syndrome? And How Can The NozeBot Help?
- Why Most Babies Can’t Breathe Through Their Mouth
To learn more about Smile Train and its incredible model, visit smiletrain.org and follow them on social media.
The Nozebot is a battery-powered suction device designed to clear nasal congestion in babies and children.
