Lip and palate cleft

Twenty-three years ago, Suzanne Ackerman-Berman’s daughter, Nikita Montlake, was born with a cleft lip and palate. Last year, the pair signed up as volunteers for an Operation Smile mission in Madagascar a life-changing’ experience for this award-winning South African businesswoman and philanthropist and her child. They share their stories. As told to Deborah Herd

Suzanne’s Story I found out when I was pregnant with Nikita that she was going to be born with a cleft lip and palate. We were living in the UK at the time and it was very new technology but the 3D scan showed it immediately. The doctors told me all the permutations of what could go wrong, including brain damage; it was so frightening. My family and parents struggled with it. They were deeply troubled by the fact that this child was going to be abnormal, so to speak. In the end they were incredibly supportive, but it’s difficult.

You ask yourself, Why me?’

But then I realised there was a reason why it was me. I could help other people appreciate that it’s okay to have a child with an abnormality. I know it sounds very trite, but I do believe things happen for a reason. You can’t just have everything perfect all the time.

I was determined to find out everything I could about cleft lip and palate. I was advised by lots of people, including family members, to terminate the pregnancy. But my husband at the time said, Where there’s life, there’s hope. We’re carrying on.’ Thank God that we did.

every class and told them how it is important to embrace other people. For her, that was the turning point for building her strength. I told Nikita that one day, when she had finished her studies, we would volunteer for an Operation Smile mission (www.operationsmile.org). She was so excited. In June last year she graduated from the University of Glasgow in Scotland with a degree in history of art and she said the time was right for our mission.

Operation Smile is a volunteer organisation that provides reconstructive facial surgery to children and young adults in need. It relies on volunteers including medical teams all over the world. It’s a phenomenal organisation; I couldn’t get over the work that was done before, during and after the mission to look after the volunteers.

Because she is not a medical professional, Nikita was a student volunteer. She went for 10 days and I went as an observer for four. They had never had a mother/daughter who had been through the whole cleft-lip and -palate experience themselves joining them on a mission. It was the most extraordinary time. We went to a little town called Tamatave in the northern region of Madagascar. Operation Smile had sent a team beforehand to set it all up. They bring everything with them, down to the last suture and toys for the children to play with; they don’t want to be a drain on the local resources.

Nikita was involved in setting up the children’s area the care facility for children going into operations. Very often the emotional needs of children and mothers are not looked after. They set up a whole room where the children can play and be entertained, and where they are shown what they are going to go through. It also supports the mothers, who are frightened and don’t know what is going to happen to their children. There was a fleet of doctors top surgeons from all around the world. The medical team is phenomenal and It was very distressing giving birth to a child who was not the perfect image of babies in adverts SUZANNE Nikita at three days old. She had her fi rst operation eight hours after she was born It was very distressing giving birth to a child who was not the perfect image of babies in adverts. I had found a surgeon who operated on Nikita the day she was born. Nowadays they won’t let you operate so early; you have to wait three to six months. The reason is that the baby is so small and still developing. You don’t know the extent of the damage, and the muscles and bone need time to settle. Retrospectively, it was the wrong decision to operate so soon. Nikita had to endure a long series of operations throughout her childhood, including three nose reconstructions.

In addition, she was born with very pronounced ears that stuck out, so we pinned them back. When she was 11 years old, we found out from another plastic surgeon that in many cases children with cleft lips and palates are born with large ears for a reason. They need nose repairs and you need cartilage; the best place for cartilage is the ears. Several times now when I have seen a baby with a cleft I have gone up to the mother and told her not to touch the ears, as the cartilage in the ears may be needed for nose reconstructions later in the child’s life.

It was a commitment of mine from when Nikita was born to understand the condition. I still don’t understand it fully no-one does but I wanted to help mothers understand it. Unfortunately, in African culture it is considered a bad omen. In many cases, the children and the family are cast out. Many children spend years without the cleft being repaired because they are thought to be possessed by a demon. Sometimes parents send the child out into the fields and they have to bring themselves up. There can be a lot of complications if a child is not cared for properly and when babies are unable to feed. They struggle with malnutrition and terrible childhood illnesses because their immune systems are so weak.

When I was able to I volunteered to become a trustee of the Smile Foundation (www.smilefoundationsa.org), which is based here in South Africa. The Foundation repairs facial abnormalities in children. When Nikita was having her Bat Mitzvah she said that instead of a gift she wanted to do something for other children with clefts. So we went to the Red Cross War Memorial Children’s Hospital and helped establish a database for clefts. Now there is a clinic every week. We also ran a Smile Week with the Smile Foundation. Unfortunately, cleft repair is not on the needs list for the Department of Health; it is considered a luxury because it is cosmetic, which is sad. There are some people who go through life without being repaired. Some never learn to speak. All speech is done with the tongue against the palate and so it is speech that becomes the main impediment.

Nikita had a tough time as a little girl. She was badly teased, but she was phenomenal. At eight years old she stood up in front of her entire school and told everyone that just because she has a funny scar and because her friends call her Skew Lip and Big Ears and Scar Face, doesn’t mean she doesn’t have feelings; she has a heart and she gets hurt. From then on, every year, she went and spoke to

It was the first time ever that I had never wanted to be anywhere other than where I was, doing exactly what I was doing NIKITA

everyone is a volunteer who is there in his or her own time. Some people have done 27 missions. It’s pretty intense. The doctors start the day at 7am and finish at 8pm. We did 115 cases in a week. You arrive on the Thursday for the setup. Then there’s the prescreening. The team takes all the vital statistics to see who is strong enough for surgery. Some of the people walk for two days to get there, only to be told the child is not strong enough. Then an education process has to start about feeding and how to make the child stronger so that they will be able to have the surgery in the future. There was one woman who had gone through the whole process. The operation was due on the Tuesday, but on the day the child wasn’t strong enough and the woman fainted. It was heartbreaking. Operation Smile puts a lot of money into research and genetic testing. There is a geneticist on the trip, as well as a speech therapist. The background work that goes into the mission is incredible.

There is often this negative impression that they fly in, fix a couple of faces and fly out, but the work that is done before and during the mission is incredible. It’s not only changing the child, but also the family the community perceptions. You hardly ever see people with facial abnormalities. We are so conditioned to seeing what’s perfect. Having Nikita has totally changed my perception. My daughter has taught me how to be tolerant of things that we shouldn’t take for granted. Being different is one of those things. In Madagascar, I saw Nikita with those kids and I have never seen her so happy. Now she is planning to work in the nonprofit field. She wants to make a difference in life. That’s her calling. She is not materialistic. It’s amazing. We need to teach people that disability is the norm, not the exception. It doesn’t have to be a physical disability; it can be a social problem, one that you cannot see. Normality doesn’t exist. There isn’t a norm in society that we need to follow.

Nikita thinks having a cleft is what has made her a special person, more sensitive to other people. And she is being really truthful when she says she wouldn’t be any other way. And neither would I. Nikita’s story I have been very lucky in my life, with an incredibly supportive family and great friends. However, as a child there was always literature for my mom to read and people she could talk to, but there was nothing for me nothing to help kids understand what they have or why. It was a lonely experience.

I was teased at school quite badly and didn’t have many friends, but I remember never thinking that I hated having a cleft or wishing that I had been born normal. Even as a child I felt I was always meant to have had a cleft so that I could be the person to other kids that I always wished to be. Finally, through the Operation Smile mission, I got the opportunity to fulfil my calling. I was able to be a comfort to parents by showing them that their children will be okay. That’s all people want to know. Being proof that everything will turn out for the best was an incredible position to be in. I was asked a lot of questions about my speech and eating, and could tell them about my journey.

Before the mission I didn’t really have any expectations. A few days before I left I had a couple of meetings with the Operation Smile team in Cape Town. They handed me an information pack, which I found so off-putting I almost didn’t want to go.

So I went with very low expectations but had the most incredible time. The mission was the best experience of my life. I am so grateful that I just went for it with an open mind and heart. Operation Smile has now rewritten the information pack for student volunteers.

It was phenomenal being part of a team of people who literally change lives for the better. There is no experience more rewarding than that. There was a group of 85 of us from all around the world and everyone had taken time off to come to perform the most incredible deeds. These are worldrenowned doctors who give up their time; one of the surgeons told me that she felt it was her duty to do this, as she had the skills.

Everyone was treated as an equal, whether they were a plastic surgeon, a student volunteer or in the medicalrecords team. I made the most phenomenal friends; these are people who will hold a very special place in my heart for the rest of my life.

The last few years have been tough for me and I felt quite lost at the time I went on the mission. It helped to put everything into perspective and made me realise what I need to do with my life. It was the first time ever that I had never wanted to be anywhere other than where I was, doing exactly what I was doing.

I was so happy and it was a happiness that I never thought was possible. It came from being in the right place, doing the right thing, with the right people. Now my plan is to become a programme coordinator (PC) for Operation Smile, where I would manage the missions. I want to get a master’s in NGO Management and then apply to be a PC.

Children with a cleft should try to realise that it is a blessing in disguise; it only makes you a stronger and more compassionate person. There is no greater person to be than a combination of those two attributes.

Lip and palate cleft Photo Gallery




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