'I was really worried but when I saw his massive smile I just adored him'
As National Cleft Lip and Palate Awareness Week gets under way Karen Ireland talks to two mothers about the condition which affected their children.
Claire Little (39) is mum to Eva Eakins (11) and Cameron Eakins (8). They live in Kilkeel and Claire, a single parent, works as a pay roll manager in a factory. She says:
I had a perfectly healthy and normal pregnancy and everything was going well until my 21 week scan. The midwife was looking at the screen and said she needed to check something with a consultant. I was worried but she assured me that everything was okay.
The consultant was busy and she told me to come back the next week and to bring someone with me. That automatically had me panicking.
My husband at the time (we are now separated) was working away from home so my mum and dad came over from Glasgow to be with me.
I was worried sick all week and when we went back the consultant said there was a lot of fluid around the brain and all he could see on my baby's face was a dark gap from the nose down.
I was really upset and had to be carried out of the waiting room. I felt sorry for anyone waiting to go who had seen the state that I was in when I came out. These initial appointments were at Daisy Hill in Newry and I was referred to the Royal Victoria Hospital in Belfast for a more detailed scan. By that time I was fraught with worry.
The first thing the consultant said was that the fluid around the brain would disperse in time which was a big relief. He then said that the hole under the nose was a cleft palate. He also told me that it was a baby boy.
We came out and I remember my mum saying to me 'right you need to be strong and take control for this wee boy. He is going to need you to be brave and to be honest with people about your pregnancy and that will save him from a lot of heartache.' Of course, I went home and instantly Googled the condition and that is the worst thing I could have done as the images were of the worst cases - and they were horrific.
Later, I was introduced to the cleft palate team at the Royal who were fantastic. They gave me a timeline and told me what to expect at certain stages and what would be happening.
When Cameron was born he was a big baby, over 11 pounds, and the lip wasn't anything nearly as bad as I had imagined.
He just had a big massive smile and I adored him right away. His older sister, Eva, was three at the time and she would say to people who noticed Cameron's appearance that 'he just has a sore lip. Santa is going to fix it'.
Just 48 hours after his birth Cameron was seen by the team at the Royal. He had his first operation at four months. To be honest, after he had his initial surgery I kind of missed his big smile.
Cameron has had four operations to date and later this year he will get fitted for braces for his teeth. Then, he will have an operation which takes part of the bone in his hip to reconstruct his gum.
All Cameron keeps talking about is how he will be able to whistle like everyone else once he has this surgery. He also jokes that he can't take a selfie as he can't pout.
Still, Cameron has grown up into a happy confident wee boy. He loves life and has always loved school and has never been treated any differently.
The school, as well as the nursery he went to, have been fantastic and that has helped him grow into the child he is today.
The surgeon, Chris Hill, and his team are amazing. When Cameron was a baby he was crying at night and wouldn't sleep. When I went to see Mr Hill he identified that it was a feeding problem and as soon as that was sorted out, he was like a different child.
It is worrying to have a child with a cleft palate but it is cosmetic and can be sorted out. Children are born every day with a lot worse illnesses and conditions than this.
I have a happy, confident child who loves to dance, play football and go swimming. Nothing holds him back and he is a great character."
‘Handing my baby over for surgery was one of the most traumatic experiences in my life’
Liz Wallace (47) is married to Brian (56). They have one son, Ryan (12), and live in Belfast. Liz is a civil servant and Brian works in retail. She says:
I found out about Ryan’s condition at a 22-week scan. I was waiting for ages and Brian had to go back to work so I was on my own when I was told. It was cold and clinical and very matter-of-fact, and I was heartbroken.
I had done everything by the book and it had taken us a long time to conceive Ryan.
We were so excited about the pregnancy and then suddenly we were anxious and worried.
Luckily I knew a senior midwife at the hospital and she was able to reassure me.
She told me not to worry — that the team were brilliant and it could be fixed. Later I met with surgeon Chris Hill and was told a team would be on hand when my baby was born to help with things like feeding.
Ryan was born by Caesarean at 37 weeks.
I had prayed that it wouldn’t look too bad and, of course, it was the first thing I noticed about him — but it was also the first thing I forgot as I fell in love with him instantly.
Instinctively, I was very protective of him and just wanted him to be healthy.
This was a facial disfiguration. He wasn’t going to die.
Most people were very supportive and just looked at him and said things like ‘God love him, poor wee thing’. Older people seemed to struggle with it more and they assumed because he had a cleft palate he was going to have learning difficulties later in life.
There was just a lot of ignorance about the condition. It is something people don’t know a lot about.
Ryan had his first surgery at three months old, just before Christmas. He had procedures on his top and bottom lip and hard palate.
Before that it would take an hour to feed him and then he was up and wide awake in the middle of the night.
After that things changed — he was able to suck properly and was on solids.
Handing over my baby for surgery at that age was one of the most traumatic experiences in my life.
He was so small and I worried about the effects of the anaesthetic.
When he came back from surgery, all I could see were the stitches and I was really worried about the pain that he would be in.
But Brian immediately said: “Look at the difference in his mouth. It looks so well.”
Ryan has had seven operations to date and last year he had a bone graph from his hip.
He is doing so well now. He has an abundance of confidence and lives life to the full. I think because we never hid him away or tried to ignore what was going on, he has grown up with confidence and faced life with gusto.
The best advice I could give any parents facing a cleft palate diagnosis for their baby is not to be afraid.
There are amazing experts out there and it will be okay — just take one stage at a time.
Ryan often asks why he never had any brothers or sisters and people think it is because I was afraid of the cleft palate happening again.
That couldn’t be further from the truth.
We tried for years to have another baby and had miscarriages before and after we had Ryan; it has been devastating but it just wasn’t meant to be.
We are blessed to have him and he is our miracle.
I’m so proud of him and the boy that he has become.”
Finding out more about the condition
A cleft is a gap or split in the upper lip, the roof of the mouth (palate), or sometimes both.
It occurs when separate areas of the face do not join together properly when a baby is developing during pregnancy.
The face and upper lip develop between the fifth and ninth weeks of pregnancy.
Most clefts are picked up either at the time of the routine 20 week scan or soon after birth.
The cleft can affect the lip area, the roof of the mouth (palate) or both.
The cleft can involve part or all of these areas and may be one-sided (unilateral) or affect both sides (bilateral).
Advances in surgical procedures bring hope
Every year in the UK 1,000 babies are born with a cleft palate, but a leading plastic surgeon says advancements in reconstructive operative procedures means there is hope for these children.
Mr Chris Hill, a member of the British Association of Plastic, Reconstruction and Aesthetic Surgeons (BAPRAS), says: “Increasingly clefts involving the lip are diagnosed prenatally and the cleft team become involved at this stage. The cleft nurse specialist sees the family to support them before the delivery so they are fully prepared for the birth and potential feeding issues.
“They are often seen within 48 hours of birth for continued support.
“My role as a plastic surgeon begins after birth when I assess the child and reassure the parents that regardless of the severity of the cleft it can be repaired. I carry out complex and often multiple procedures to correct the deformity.
“Follow up continues for years in order to ensure an optimal result is achieved and maintained.
“There are multidisciplinary teams with speech therapy, paediatric dentistry, orthodontics, clinical psychology and maxillofacial surgery being involved, depending on the cleft type.
“It is great to see my patients grow up and do well, and I feel really fortunate to get to know the families over the years.”
Contact Pamela Foster; the cleft palate team at the Royal Victoria Hospital, tel: 028 9024 0503.
A parent wanting to make contact directly with Liz Wallace who can talk through her own experience should email firstname.lastname@example.org