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AnSWeR  > ConditionsTurner's Syndrome > Cases > Abigail > Mum's Interview Highlights 01



Interview with Abigail's Mum Jackie 01
 
When did you find out that Abigail had Turner's?
 

All images appear courtesy of the Wellcome Trust Medical Photographic LibraryThere was a scan, an antenatal scan done at 16 weeks and they found that the femur length was out of proportion with the rest of the body. They sent us for an in depth scan at Guy's, the results of which showed that there was a serious chromosome abnormality. They noticed certain physical things that were not looking quite right. There was a huge growth on the back of her neck. Her hands and feet looked extraordinarily large. The limbs were shorter than they should have been and there was a heart defect. And they noticed all this from a scan at 20 weeks. From there they did a chromosome test using blood from the umbilical cord and from that they found out she had Turners Syndrome. So it was a very trying time.

 
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What was your reaction?
 

All images appear courtesy of the Wellcome Trust Medical Photographic LibraryAnd we said, well what is that? We don't know what that is. And there was only someone on hand who had very limited information about Turners Syndrome. We found this out on Christmas Eve by the way and all the hospital lab technicians had gone home by then for Christmas holidays, so we were left in the dark really. We just had this very basic information about Turners. I first found out that the main problems with the girls were that they were of short stature, which could be helped with growth hormone injection, but intelligence was across the board, so mentally they were not really affected. They had their fair share of problems but with help they could live normal lives. So at that point I was jumping up and down in the room, because we'd been given such dire information to start with. But I was worried of course.

 
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How did you feel when she was born?
 

All images appear courtesy of the Wellcome Trust Medical Photographic LibraryI was elated when she was born, because I was always worried that I would miscarry and I really wanted this baby. I loved this baby, I hadn't seen this baby but I loved her (or him. I didn't know it was a girl initially, but I was elated when she was born. She was a good weight. She was slightly jaundiced but she had a good pair of lungs on her, so she was obviously quite strong, but I could only hold her for ten minutes and then she had to go down to the special baby care unit where she awaited heart surgery which took place two days later, so she couldn't eat or drink. She couldn't drink milk or be fed at all and she had all leads on her and you couldn't really cuddle her properly and that was very hard. And I think she suffered during those two days as well. I think she was hungry and she was lonely and that was very, very traumatic. Very upsetting. A lot of tears shed then.

 
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How did you cope with the heart surgery?
 

All images appear courtesy of the Wellcome Trust Medical Photographic LibraryI cried a lot. I convinced myself that she wasn't going to come out of it. Even though they had said that there was a 90 % success rate, I thought that oh she'll be the 10 % that don't make it and I was just dead, dead scared of losing her. But she went in and the operation was five hours. It was extremely hard waiting and then I phoned down to say 'any news, any news?' and they said 'yes, she's just coming out, she's coming into intensive care' and like that was it, I just rushed down there to see her. She did look a bit of a sight. Her face was covered with head gear because they needed to strap the breathing apparatus on her head to keep it in place. Her face was all puffy from where it had been strapped and she obviously had the wound where the heart surgery had taken place. Leads and tubes everywhere going in and out of every part of the body which was quite harrowing to look at. But, you know, she made it, she got there. She was in ITU for 9 days but the signs were that she was making progress every day and on the ninth day she went up to the heart ward and that's when they said "if she goes up to the children's heart ward, she's made it".

 
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Last update: 13 October, 2005 11:15 AM


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