We went for numerous scans to check the baby was ok and were given photos of the baby every couple of weeks. Then at 20 weeks we had the abnormality scan.

I would like to share my story with you in the hope that it might help someone else in a similar situation. I didn't think I could have children. My body just didn't seem to work properly and years of going back and forth to doctors didn't seem to be getting me anywhere. A laparoscopy suggested that everything was fine yet I still wasn't having periods and was in pain. We eventually went to a fertility clinic that was able to tell us immediately what the problem was. They started me on tablets to make me ovulate but nothing happened. Doubling the dose still didn't produce any eggs and we were put on the list for IVF. I carried on taking the tablets and I managed to have three periods in a row and then missed two. When I did a test (more to eliminate the possibility than anything else) it was positive. We couldn't believe our eyes. We thought the hard bit was over but a few days later I started bleeding and bled on and off for the rest of the pregnancy. We went for numerous scans to check the baby was ok and were given photos of the baby every couple of weeks. Then at 20 weeks we had the abnormality scan. When they showed us the baby's face we could see a dark line on her lip. My father in law had a cleft lip so we asked them if the lip was ok but we kind of already knew the answer. At the end of the scan they told us we were having a girl but that she had a cleft lip. The scanners told us "not to do anything hasty but to think things through". We were given a leaflet and referred to another hospital for a more detailed scan to see how bad it was. We knew what they meant by nothing hasty but we had waited so long it didn't cross our mind to terminate. We were absolutely devastated at the news. Nobody wants to think their child will have anything wrong with them. Our first reaction was to wonder what she would look like, how would people react to her, how would she feed etc. They told me she might need to be tube fed at birth and the thought of it made me so sad. The following week we had the more detailed scan. They couldn't tell us whether it was the palate as well as the lip. The scan showed she had a two-vessel umbilical cord and the doctor had to prepare us for the worst. He said there was a chance she could be born brain damaged and that the cord and the lip suggested there was an underlying chromosomal problem. We left there with a report to read that outlined the risks. At that point, there was a 20% chance she wouldn't even live up to birth. The pain we felt in our hearts just can't be described. I felt like all my hopes and dreams had been taken away from me. We determined to enjoy this baby every day that we had her and just hope for the best. Our friends and families gathered around us and our church were all praying for us. We had to go back every four weeks for scans to check the blood flow through the cord and see whether she was growing properly. Every time I went I knew if there was a problem they'd have her out immediately but every time they said she was bigger than her weeks and doing better than average. By 34 weeks they were happy that she would go to term but I had so much fluid I could go any minute. And I did. At 34 weeks I went into hospital with contractions every five minutes but not dilating. There were no special care beds available and they eventually stopped the contractions with drugs. I managed to go until 37 weeks when she was born by emergency c-section. I was so excited that she was on her way but so scared about what she was going to look like. Her cord was really struggling by then so I was scared for weeks that she had brain damage, until she could see and respond to me a bit more. When I saw her it was the most amazing moment of my life. She had thick dark hair and the lip wasn't as bad as we thought. To be honest, when I looked at her I didn't even see her lip she was just my baby. She latched on straight away and I have been able to breast feed with no trouble at all. I was so scared that people would react with horror when they saw her, but she has such a pretty face and big blue eyes that that is what people see. From two weeks old, I have taken her to mother and toddler groups and never had a bad reaction from people. She had her lip repaired at the end of April and it was the moment we had been dreading for all those months. I couldn't watch her go under anaesthetic and go into the theatre. Those two hours were the longest of my life. I will never forget the moment I saw her for the first time. The nurse turned her around and she looked like she had been punched in the face. Her nose was bloody and her face swollen. I just cried and held her close to me as they wheeled us back to the ward. Remarkably though, she snuzzled in and latched on within minutes and managed to feed with a little repositioning. Within two hours (and a shot of morphine) she was smiling again and telling us stories. It took a few days for the swelling to go right down but I knew when her smiling eyes came back that she was my baby however different she looked. The reason I am telling my story is that I have been told that lots of people are deciding to terminate because their baby has a cleft lip and/or palate. I just want to say that it is not as bad as you imagine. None of my fears and imaginations came to pass. I was scared about how I'd react when I first saw her, how other people would react to her, how would she feed etc. It hurts me to think that people are going through the pain and trauma of a termination for something that really is so easy to put right. I have a wonderful, beautiful daughter that is so loving and sweet and it upsets me to think that someone else might have chosen to abort her because she isn't perfect. Thank you for reading this. My thoughts are with you. XX Editor’s note: Thank you for sharing the story of your journey re fertility, your daughter’s birth and subsequent operation…It’s wonderful that you have both come through this so well, having had the courage to pursue the pregnancy in the face of the diagnoses you were given. We are very happy to hear how successful the operation was, and it’s very heart-warming to hear how you were able to respond to her when she was born. I’m sure your story will help to encourage and give hope to others facing the same situation. Unfortunately we cannot encourage any personal contact through the website. If you would like to get in touch with your nearest centre, perhaps they would like to keep in touch with you as a useful resource in order to help anyone they meet who may benefit from knowing more. Thank you for thinking of others who may benefit from meeting someone in a similar situation. We appreciate it very much.
This story was sent in on 20/06/2009

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