Rowena Samuels, a Retreat mother who is balancing work as an admissions clerk at Melomed Tokai and caring for her 10-month-old born with a cleft lip and palate, says it can be overwhelming, but she is taking it one day at a time.
Ms Samuels was 26 weeks pregnant when she learnt her son, Dario, would be born with a bilateral cleft lip and palate so severe doctors recommended she terminate the pregnancy.
Dario’s parents received another blow when doctors said there was a good chance he had Down syndrome, that one of his heart valves wasn’t connected to his heart and that his chances of surviving were very slim.
According to Operation Smile South Africa, an international medical charity dedicated to helping underprivileged children born with cleft palate and cleft lip, the cleft lip and palate prevalence rate is 0.3 per 1000 births in South Africa.
According to Operation Smile, babies before birth can have a split, or cleft, in their lip and the roof of the mouth. This split normally closes between the 6th to 11th week of pregnancy, but, in some cases, it fails to close properly. A cleft lip is easy to recognise, but a cleft palate, which is a gap in the roof of the mouth, is only visible when the baby’s mouth is wide open.
Dario has pushed through, the valve to his heart has remedied itself and there are no signs of Down syndrome so far. His first cleft corrective surgery at Red Cross War Memorial Children’s Hospital closed his upper lip and the part of his soft palate. His next operation, on December 1, will work on closing the gap in his hard and soft palate. According to one of his doctors, he may need seven to nine surgeries.
”Cleft babies are sensitive babies that require more patience, extra love and care,“ says Ms Samuels.
She says Dario is a special boy who has special needs. Like other babies with a cleft condition, he needs to be upright when feeding. He only started eating more solid foods a month ago. He often sneezes when feeding despite the food being mashed and it all can come up out of his nose. He is prone to ear or chest infections, and water blisters sometimes form on his repaired lip. He may require speech therapy or audio classes later.
The Samuelses are trying to give Dario all the support he needs, but they are still struggling to pay off an emergency C-section and the costs of Dario spending his first month in ICU. The family have been holding fund-raisers and are planning another one soon.
“Dario is an adventurous and curious boy. He wants to explore and touch things on his own. He really keeps me on my toes,” says Ms Samuels, who thinks he will be very talkative in future. She just hopes to give him all he needs to get there.
If you can want to help the family with their medical expenses, visit their BackaBuddy page at backabuddy.co.za/dario-samuels
