Daniel’s Family Navigates Tragedy and Healing

Rene will never forget accompanying his wife, Lizbet, to the ultrasound. It was remarkably unremarkable. All was well.  

Only later did he learn the truth: The doctor saw that their unborn son, Daniel, had a cleft. In an attempt to protect Lizbet from stress, he chose to remain silent.

It was the worst thing he could have done.

Daniel spent the first five days of his life in intensive care. Meanwhile, Lizbet tried to rest and recover from what had been a difficult birth. Left to wait alone at the hospital, Rene worried himself sick over both of them. He had never seen a cleft before. The delivering doctor never explained what it might mean for his son’s health or future. In the absence of answers, his mind filled with worst-case scenarios.  

Daniel finally arrived home after an extended hospital stay. It was a Sunday. Still recovering from the birth, Lizbet laid eyes on him for the first time. Like Rene, she had never seen a cleft before. In her delicate state, the stress was too much for her to handle.

On Monday, she suffered a stroke.  

Lizbet spent three months in intensive care, with Rene by her side the whole time. The doctors told him the stroke was due to the shock of seeing Daniel’s cleft.

Six years later, she still has not recovered.

“Daniel doesn’t know his mom,” Rene said. “Daniel’s grandmother raised him like a mother.”

Amid unthinkable sadness, Rene had one small glimmer of hope: Hospital staff recommended he meet with Dr. Aillón, a surgeon who worked with a local Smile Train partner.

Sitting with Dr. Aillón, Rene at last learned the truth about clefts — that they were both common and treatable. It was eye-opening. Up until that point, Rene had thought Daniel was the only baby in the world born this way.  

Finally, he had answers. Finally, there was a plan for Daniel’s care.

Daniel went in for surgery to heal his cleft lip around his first birthday. When he returned home, Rene noticed an immediate improvement in his ability to eat. He saw even more progress after Daniel’s next cleft surgery, on his cleft palate. For the first time, he started to believe his son could have a bright future. 

Today, Daniel is six years old and full of energy. He is doing well in school, where he has plenty of friends and is very sociable. At home, he loves to ride his bike and play games. He especially gets a kick out of imitating his older sister.

Rene will never forget the terrifying first few weeks of Daniel’s cleft journey. He will never forget how it felt to have no answers — to look at his son’s cleft and be overwhelmed with helplessness. 

It’s an experience he firmly believes no parent should have to endure. He is now an outspoken advocate for expanding access to cleft education.

“We must inform as many people as possible that clefts are treatable. Ignorance about this issue led to me thinking many bad things. You don’t know how to act or what to do.

“I have seen how, in rural areas of Bolivia, parents reject their babies who are born with clefts. I heard that it is seen as a sign of bad luck, and that in some places, they even try to prevent the child from continuing their life.” 

To Smile Train’s donors who changed everything for Daniel and for so many others across Bolivia and around the world, Rene wishes to send a message:  

“Thank you, not just for my son, but for all children.”