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Healing Smiles
About one in 700 children is born with a cleft lip or palate
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It all started on June 12, 2008, when I had the 20-week scan where they check for anatomical irregularities. When the sonographer told us she had detected a cleft lip that “appeared to extend into the palate”, I felt as if someone had literally knocked the wind out of me. I was numb, as was my husband who, thankfully, was there with me holding my hand.
My gynaecologist put us in touch with Prof Laurence Chait, the plastic surgeon at the helm of the Cleft Lip and Palate Programme at the Netcare Park Lane Hospital in Johannesburg. He works with a team of specialists, including an ENT doctor, an orthodontist, a speech therapist and a social worker.
Chait said he could fix the problem, irrespective of whether it was the lip or the lip and the palate. I was relieved that Aidan could be a perfectly happy and healthy child despite this unexpected, yet surprisingly common, birth defect.
I’m not saying it has been an easy journey. Aidan’s cleft was a unilateral, complete cleft of the lip and palate on the left hand side of his face. He had to be fed using specialised bottles – soft bottles that you can squeeze – as babies with clefts cannot suckle properly. We also found that Aidan swallowed a lot of air when drinking. But we got through it. Aidan will be three years old this month. He is a handsome, bright and well-adjusted little boy, who attends playschool and gets up to just as much mischief as his peers.
Getting it fixed
Aidan had his first corrective surgery – the lip repair – when he was not even four months old. His little arms were in casts (to prevent him interfering with the stitches), he had to be syringe-fed and couldn’t have the comfort of his dummy for a whole week. He healed beautifully and his scar is now barely visible. At nine months, he had his first palate surgery. The top of his little mouth resembled a road map with all the stitches, and once again we endured the casts on the arms, syringe feeding and no dummy for a week. This time Aidan was more mobile and he missed the use of his arms and the solid foods he’d been enjoying. When the stitches dissolved, I saw a work of art. Chait had not only repaired about 80 percent of the cleft, but he had crafted an uvula out of existing tissue in the mouth. It was amazing. Aidan could now eat with almost no food coming out of his nose.
In January this year, my brave little warrior (his resilience never ceases to amaze me) went under the knife again for a second palate surgery. My busy toddler kept saying “off” as he tugged at the casts on his arms. But we survived, and Aidan now has only a negligible hole just behind his front teeth, which doesn’t interfere with eating or speech development. The gap in the gum is still there and will be reviewed at a later stage by the orthodontist and Chait once Aidan’s permanent teeth are through. Due to the compromised Eustachian tube, which links the pharynx to the middle ear, and is associated with clefts, ear infections can be a problem. So Aidan has had a few sets of grommets and the ENT specialist checks on them regularly. He goes for speech therapy once a week and is making great progress. Thankfully, there is life after a cleft.
Living with a repaired cleft
Martin Roemer, 35, from the East Rand in Johannesburg, says, “Being born with a cleft lip and palate certainly had an impact on my life. I felt self-conscious about the scar on my lip and the flattened appearance of my nose on the side of the cleft. When I was 18, I had my last operation. It was mainly cosmetic, as the flattened side of my nose was built up using cartilage from my rib cage to make it look more symmetrical. I was very happy with the result and no longer felt self-conscious. Now that I am in my mid-thirties, however, I am becoming more aware of having a cleft palate again because I am struggling to breathe out of the side of my nose that was repaired. My palate seems to be losing its elasticity too, resulting in small gaps opening along the cleft, making it harder to speak as clearly as I used to. My teeth on either side of the cleft are becoming less stable in my mouth and I fear they will eventually fall out and have to be replaced with a bridge. In a few year’s time, I will probably need corrective surgery again, particularly on my nose to help me breathe a bit better and in my mouth to close the palate again. Despite these complications, I have rarely felt compromised by them. In no way did having a cleft palate prevent me from leading a normal, happy life and achieving all that I set out to.”
What is it and why does it occur?
We all start out life with a cleft lip and palate. During normal fetal development, between the sixth and 11th week of pregnancy, the clefts in the lip and palate fuse together. In babies born with a cleft lip and/or palate, one or both of these splits fail to fuse. Specialists are still puzzled about the exact cause, but most believe clefts are caused by one or more of three main factors: an inherited characteristic (gene) from one or both parents, environmental factors such as exposure to a sub-clinical virus in early pregnancy, and genetic syndromes.
Clefts in the lip can range from a tiny notch in the upper lip (an incomplete cleft) to a split that extends into the nose (a complete cleft). A cleft palate can range from a small malformation, which results in minimal problems, to a large separation of the palate that interferes with eating and speaking. Clefts are often referred to as unilateral, a split on one side, or bilateral, one split on each side.
In 50 percent of cases, the cleft lip and palate occur together; a condition more common in boys. The occurrence of the cleft palate on its own, in 30 percent of cases, is more common in girls. In the remaining 20 percent, the cleft is of the lip only.
Dr Paul Skoll, who performs cleft lip and palate repairs at Netcare Christiaan Barnard Memorial Hospital in Cape Town, offers the following advice: “When planning to fall pregnant, women should start taking 5mg folic acid per day, as this has been shown to decrease the incidence of neural tube defects as well as clefts. Usually one only confirms that one is pregnant after several weeks, by which time most facial development may be complete, so it could be too late to only start the supplement at that time.”
Get help
- Cleft lip and palate support group: 021 404 6459
- Cleft Friends: visit cleftfriends.co.za
- Cleft Angels SA: info@cleftangels.co.za or visit cleftangels.co.za
HI,
Lovely article. Cleft Angels SA is 3 years old now and we have updated our story video on Karlie, my daughter.
So please feel free to check it out and hope that you find inspiration in it like I found in Karlie.
http://www.youtube.com/watch?v=phgyTeNVwIU