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 My Story

We were so excited to find out I was pregnant with a very wanted and wished for baby. We went to the 12-week scan and the 20-week scan and all seemed well. At 28 weeks decided to pay for a 4D scan to see our baby in more detail and to find out whether we were having a boy or a girl.
As soon as we looked at the screen we knew something wasn’t right with the baby’s lip. First we were told that we were having a girl and were then gently told that it looked as though the baby had a cleft lip and possibly a cleft palate – but as this wasn’t a ‘medical scan’ in a medical setting (it was for ‘entertainment purposes’ only) they were not able to give us a proper diagnosis. So we were sent away with this information and a letter for our GP.

So on this Saturday morning we went home and just didn’t know what to do or where to go. I knew nobody with a cleft; I wasn’t even completely sure what an unrepaired one was. I admit that I just collapsed mentally – I was devastated. My husband did what most people would do and looked on the Internet and managed to scare us both completely. At this time the phone started to ring and texts came through excitedly asking if we were having a boy or a girl as everyone had known we were going for the scan. I couldn’t talk to anyone – I just sat and cried (and continued to do this for the remaining 12 weeks of my pregnancy).

On the Monday following the 4D scan we went to see my GP and showed her the letter. As we were in the unusual position of not being diagnosed in hospital, she was unsure to whom we should be referred. After a few days of phone calls, letters, and referral faxes, we were referred to the Cleft Team at Addenbrookes. Within a few hours of the referral being received at Addenbrookes a wonderful lady called Eileen (one of the cleft nurses) called us to say that she would come and visit us at home. She arrived and gave us all the information we wanted in a way that we understood without scaring us. I cannot fault the care that she gave us - she was like a guardian angel!
Over the following 12 weeks we had many more meetings and comforting phone calls with Eileen. We also had a scan at Addenbrookes to confirm the initial diagnosis (which I cried all the way through). Eileen arranged meetings with my midwife and health visitor to give them all the information they needed and was always at the end of the phone if we needed her.

The last 12 weeks of my pregnancy were not enjoyable. I didn’t want to be pregnant and was not coping with the news at all. I was frightened and filled with dread about what the future held for my baby, my husband and me. I could see no way that the situation would ever be okay.
When I did go into labour, 6 days overdue, I had not come to terms with the cleft was still not mentally ready to meet my baby. I had a long, painful, frightening and complicated labour and when our daughter arrived I was still mentally a mess.

The following day the cleft team arrived at the hospital and went into action – we were given sqeezey bottles, advice on breastfeeding, first aid advice and anything else that we needed. Slowly I started to recover from the shock of the past 12 weeks and got on with being a mum. I admit that sometimes it was hard; I had to force myself to go to places like mums and babies groups where other mothers and their ‘perfect’ baby’s would be and if I did go out I hid her away in her pram with the hood up. We had great support from our family and friends and anyone we didn’t know that did see her made no negative comments. So although it was a tough 3 months it wasn’t anywhere as bad as I imagined it to be.

All too quickly her first operation date arrived. I had mixed feelings… I wanted her to have the operation so we could get on with the rest of our lives (it was as if our life had been on hold until this moment) but was not looking forward to handing over the baby I was growing to love to a surgeon for a huge operation. I cried for most of the 5 hours she was away from us (I think everyone was used to my constant tears by now!) When we saw her again the strangest thing happened… I realized that I missed her ‘old’ face and her wide smile. I never thought this would happen! But in a few days we got used to her new smile. Her recovery was quicker than we expected and she took her bottle only a few hours after surgery. We went home 3 days later. She was very brave and amazed us with her resilience. She needed no more than some Calpol when we returned home.

Her second operation was a little easier for us in that we knew what to expect. She had her palate repaired at just over 6 months old. She quickly grasped eating solids after this and gained weight very quickly. A few weeks before her 1st birthday we went for her first annual check-up and she was ‘signed off’ for a year. The relief that came with this was immense. I hadn’t realised how much our life had become a round of appointments, check-up and operations.

For her first birthday we had a massive party and I felt that we were celebrating not only her first birthday but also the start of a new chapter. I felt for the first time that I could relax and enjoy my daughter and enjoy being a mum!

So where are we now? Our daughter is just over two and is growing fast. She has just had her 2nd annual check and has been signed off for another year. After being underweight during her first 6 months she is now on the 91st centile for her height and weight. Most people don’t notice her cleft until I point it out. She has speech and language therapy once every six months but at the moment there seems to be no delay in her speech. Her hearing is fine and she eats enough for three! She is a loving and kind little girl who is showing her independence on a daily basis (read terrible twos!)

We rarely think about her cleft nowadays – something I never thought would happen during those dark days of pregnancy. I think that the message I am trying to convey is that it is a tough time but that there is an end and it DOES get better!

‘CARA’S STORY’