WINDHOEK - The Nampharm Foundation Trust has operated on over 100 children born with facial deformities such as cleft lip and cleft palate, putting not only a smile on these young lives but also resulting in speech enhancement for these children.
Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don’t close completely.
Cleft lip and cleft palate are among the most common birth defects. According to the Mayo Clinic website, cleft lip and cleft palate most commonly occur as isolated birth defects but are also associated with many inherited genetic conditions or syndromes.
In most babies, a series of surgeries can restore normal function and achieve a more normal appearance with minimal scarring, according to Mayo Clinic.
Carol Semedo, the Manager and Trustee of the Nampharm Foundation Trust told the Health Focus that 110 children have been operated at no cost since 2005.
“But most of these children have had two or more procedures, so we can actually say we’ve done over 220 procedures,” said Semedo.
She said 14 of the children died with this condition, of which five have had the first procedure and unfortunately, they succumbed to other medical conditions.
“These deaths were not because of the condition that wasn’t related. Nine children are waiting for lip surgery and we have 25 awaiting palate surgery and there are children we cannot get hold of because phone numbers have changed and of these, four are for lip surgery and 13 for palate,” explained Semedo.
Semedo explained the trustees of the Nampharm Foundation Trust realised that there was no department specialising in facial reconstruction for these conditions within the Ministry of Health and Social Services.
“So we spoke to the Ministry of Health and Social Services and we decided that we were going to start this project but it’s privately funded, we don’t get money from government but we are in partnership with the government. We’ve got a memorandum of understanding with the Ministry of Health and Social Services signed that we operate only state patients. So, we don’t operate on private patients, we only help state patients. The Ministry of Health and Social Services brings the children for us from the regions and once they get here, we take over and operate on them,” Semedo explained.
Currently, children are operated at a private hospital in Windhoek, she said. “One of our biggest sponsor is Standard Bank who have committed N$200 000 a year for four years. Our agreement with the health ministry is renewable every five years,” remarked Semedo.
There are five doctors who have committed their time as volunteers to this project, said Semedo.
“There are plastic surgeons within the ministry of health but because this is such a specialised area, we felt it needed a dedicated team to run with it. There’s a lot of follow-ups, there’s a lot of consultations and counseling,” added Samedo.
Explaining how the children are identified, Semedo said “they bring these kids to our attention at birth and then we follow up, but we only operate up to the age of 16. If a child comes to us after 16-years, basically they’ve learnt how to speak and eat with that condition so to try and teach a child from that time onwards is difficult, so it’s better for us to catch them when they are small.”
With more awareness on the work of the Nampharm Foundation Trust, more people with cleft lips and palates are coming forth, she explained.
“All the regional hospitals and health centres know about us now, we have posters in clinics. The awareness that has grown has made people willing to come to us because they know there’s help,” Semedo added.
The high population is in the north of Namibia and that is where this condition is prevalent, she said. “In the south, we don’t get so many, but I think it’s because most of the population of Namibia is in the north,” added Semedo.
Asked on the signs expecting mothers can look out for, Semedo responded: “Unfortunately the only time you can tell is through a sonar. You can’t tell before and unfortunately we don’t have a research team under the ministry of health to specifically say what the causes are and you can’t say its maternity care because I think they (expecting mothers at state facilities) get everything they need so we don’t know what the cause is.”
She further said: “At the moment, it’s unknown and unfortunately the state hospitals do not do sonar scans for all pregnancies. You only do sonar if you’ve got a high-risk pregnancy. So most of these mothers only discover they have a child like this at birth when the baby is born. Fortunately for us the awareness is growing so much that as soon as a child with this condition is born they call us.”
The parents of children born with these conditions undergo counseling to accept their children’s condition. And the newborn babies are provided with feeding bottles because they find it difficult to suck, Semedo explained. She also said that the mothers are more accepting of children with the condition.
“I’ve come across fathers that have disowned their kids, they say it’s a curse, it’s not in their family. After the operations, three of them came around because when we speak to them (parents) we say it’s nobody’s fault that the child is born that way. I find a lot of fathers are not involved which is sad, it’s mainly the mothers. I deal with a lot of single mothers,” she added.
In terms of care after surgery, there is not much care needed if it’s the cleft lip, explained Semedo.
“The baby or child can go back to eating normally, obviously you have to clean the wound but because of the social group that we deal with, we always advise that they clean the wound with lukewarm water and salt,” she said.
With the cleft palate, they are not allowed to eat solids for a week.
“We give them a clear fluid diet which state hospitals help us with. If they eat the stiches may come lose or food may make the stiches rotten and then they fall out. After a week, we encourage them to eat soft solids and then they can go on to eat normally after two weeks,” said Semedo.
2019-04-01 10:18:38 2 months ago