Never Sleep on Yohanes

Atsede cried when the nurses took pictures of her newborn son’s face, begged them to stop. She had never seen anyone with a cleft before this moment, when she held her first child, Yohanes, for the first time. When she put him to her breast, the milk came out his nose; instead of soothing him, it only made him cry harder. His cleft didn’t stop her from loving him, but it did taint those precious first moments she had so anticipated with a sting of dread.

Her husband, Aschalew, bounced into their room to meet his new son. And then he left. He had a distant relative with a cleft who had surgery to heal it a long time ago, after years of saving every penny. But Aschalew thought this child didn’t have years to wait and he couldn’t bear the thought of bonding with a child who seemed fated to die soon.

Only a mother for a few minutes, Atsede already felt like a failure. Thankfully, the hospital staff never left her side. They reassured her that there was a hospital in the next town, Yekatit 12, that specialized in helping children with clefts and made her an appointment.

At Yekatit 12 Hospital, a nutrition counselor taught Atsede how to feed Yohanes with a spoon and told her that, though her son qualified for free cleft surgery thanks to their partnership with Smile Train, it would not be safe to perform it until he reached a healthy enough weight. At his current pace, he estimated that would likely take about nine months. He showed her pictures of other children before and after cleft surgery to ease her mind, then scheduled their follow-up appointment.

But Atsede’s mind was not put at ease, not at all. The nutrition supplements Yohanes needed cost much more than her family could afford. How would he get healthy enough for surgery if he couldn’t eat? She left cradling him close to her heart.

Most of her family was more optimistic. They remembered their relative with a cleft and assured her that Yohanes would live and receive surgery and be fine. Others disagreed and suggested sending the boy to an orphanage. We simply cannot afford the supplements he needs, they argued. We need to eat, too, and this way, we will all survive.

Atsede felt torn. She loved Yohanes more than anything in the world, but… he had difficulty sleeping and feeding and needed to be constantly elevated so he didn’t choke. He cried day and night and every single scream felt like a knife in her heart. Constant fights over his food running out pushed her marriage to the breaking point. She sold her belongings to purchase it, and when she ran out of things to sell, began feeding him diluted cow’s milk*. Superstitious neighbors blamed her for her baby’s cleft, forcing her to stay indoors and hide her son’s face any time visitors arrived. Aschalew spent most of his time working to avoid caring for him.

She knew being a mother means doing what’s best for your child even when it’s not easy.

In desperate moments, she contemplated suicide.

No. She just couldn’t give up her baby. With zero sleep and endless love, she and Yohanes muscled through together, and not only did he survive to see his nine-month appointment, but the hospital staff determined he had gained enough weight to safely receive the cleft surgery he so needed.

On the day of the surgery, Atsede felt like too many seeds stuffed into too tiny a pouch. Like the day he was born, she felt at once joyful and anxious; full of hope and full of dread. One moment, she dared dream of a bright future for her son; the next she panicked that he wouldn’t survive the surgery.

It went off without a hitch. When Atsede and Aschalew saw him wheeled out of the OR, they felt they could breathe for the first time since he was born. And smile.

He recovered well and was soon eating and drinking greedily as every other baby. Yohanes 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 survive and thrive. They look forward to the free, Smile-Train sponsored speech therapy he will begin soon to help him speak clearly and interact with his classmates with confidence.

Astede now keeps a picture of Yohanes taken just after his surgery with her at all times as a reminder never to lose hope.

*When babies struggle to breastfeed and specialized bottles aren’t available, doctors often recommend properly prepared formula or boiled and cooled cow’s or goat’s milk. This is not medical advice, and you should always consult your pediatrician or certified nutrition specialist if your child has difficulty nursing.