National debate has been sparked by the decision to offer the NIPT test to all pregnant women on the NHS, with many fearing the highly accurate test will lead to a rise in
abortions if it detects the baby has Down’s Syndrome.
AASMA DAY talks to Lancashire mum Hayley Carter who only discovered her daughter Lola had Down’s Syndrome after doctors tested her after birth. She tells how she wouldn’t change Lola for the world and how she has enriched her family’s life
GAZING at her daughter in disbelief, Hayley Carter struggled to fathom what the doctors were telling her.
As they talked about markers and chromosomes and a midwife hugged her and started crying and saying: “I’m sorry”, Hayley could not understand why they were telling her Lola was displaying the standard features of Down’s Syndrome.
Hayley, 34, who is married to Jason and lives in Hoghton, near Preston, says: “I just kept looking at Lola and thinking: ‘What?’ She’s beautiful and perfect to me. I don’t see these things.”
Hayley, who also has a stepson Aiden, 12, had already had son Shaun, now 10, with Jason and everything had gone smoothly with the pregnancy and birth. When she became pregnant again and discovered at the 20-week scan that she was having a girl, she was delighted.
Hayley recalls: “I had my 12-week scan and my 20-week scan and nothing was picked up at any point during my pregnancy and I was in ignorant bliss.
“I don’t remember being offered any test for Down’s Syndrome.
“I think I was quite ignorant and it never even crossed my mind that I might have a child with Down’s Syndrome. I thought it was older women who had the risk of having a baby with Down’s Syndrome.”
Lola was born on March 25, 2010, weighing 6lbs 3-and-a-half oz and the birth was so quick, Hayley had given birth within 17 minutes of getting to the hospital and going on the ward.
Lola arrived so quickly, her husband Jason missed the birth and Hayley had her sister with her.
Hayley remembers: “Looking back, the midwife kept asking: ‘Who does she look like?’ and ‘Does she look like her siblings?’
“I did not think anything of it at the time, but in hindsight, I realise the midwife suspected Lola had Down’s Syndrome. But I did not have a clue. When I looked at Lola, I just saw my daughter, a beautiful baby.”
Hayley had given birth to Lola at Chorley, a midwife-led unit, late at night and, in the morning, the midwife told Hayley they were transferring her and Lola to Preston as Lola hadn’t fed much and they wanted to get her checked over by doctors. Hayley says: “I just thought with Lola being tiny and being born so quickly, she was probably just tired.”
When Hayley got to Preston, a consultant came to see and started pointing out markers and discussing chromosomes and told her they wanted to do some blood tests on Lola.
Hayley explains: “The consultant pointed out Lola had a crease on the palm of her hand and said she had a big gap from her big toe to the rest of her toes which is called a ‘sandal gap.’ She also said her ears were low set and there was a flat bridge on her nose and here eyes were far apart.
“These are the standard features for Down’s Syndrome but not every child has them.
“When they mentioned Down’s Syndrome, I was just in shock. A midwife came in and hugged me and said she was sorry and she was crying.
“I started crying too. I did not understand what was happening or the implications.”
As Hayley was on her own, she was told to ring her husband and she told him Lola was being tested.
The consultant told the couple the results would be back in five days and when they returned to the hospital, specialists confirmed Lola had tested positive for Trisomy 21 – which is Down’s Syndrome.
Hayley explains: “Lola has an extra 21 chromosome which means she has 47 chromosomes instead of 46. People were visiting and they all said Lola didn’t look like she had Down’s Syndrome. To me, she was just my daughter. I loved her so it did not really matter. I tried not to think of the worst case scenarios.”
After Lola was diagnosed with Down’s Syndrome, as children with the condition can have heart problems, she underwent tests. However, everything was fine. She does have a small hole in her heart but it checked every year and has almost closed.
Hayley says: “Lola has learning difficulties and her development has been a bit slower. She took a bit longer to roll over, sit up and walk.
“Lola has got quite a few words with her speech but she also signs and her signing is amazing and she communicates brilliantly.
“Lola does get chest infections and colds but, other than that, she is a healthy little six-year-old. Lola is very determined and independent and she tries to do everything in life and Down’s Syndrome does not hold her back at all.”
Lola attends mainstream school and is a pupil at Brindle Gregson Lane Primary School and Hayley says children at school are very understanding and like to help Lola –although she doesn’t always want help as she can do most things.
Hayley says: “Lola loves playing with her friends and singing and dancing and she enjoys going to Brownies and watching Peppa Pig.
“Her nickname is Houdini as she is very flexible and loves climbing and she likes showing off with gymnastics.
“Lola loves having her photo taken and is a real diva. She has just been taken on by a model agency. Lola can have her grumpy moods too and can be stubborn!
“Lola is a very happy child and apart from the fact she is a bit delayed with learning, I don’t see her as any different to anyone else. To me, her dad, her brothers and her friends, she is just Lola and she is not treated any differently.”
Although Hayley is not against the new NIPT testing, she does feel frustration at many people’s outdated opinions of Down’s Syndrome.
And she wants people to know how rich a life with Down’s Syndrome can be.
Hayley explains: “I am not against the NIPT testing as technology moves on and there are always new things.
“However, I feel the information given alongside with this testing needs to be updated. The way I was told was not good as I was on my own and things were pointed out about my child that were not there.
“If you are pregnant and are told things about your baby before you have even seen your child, I feel it is going to have a negative effect if you’re not told properly and given up-to-date details about Down’s Syndrome. There are lots of groups out there so people should speak to them before making their choice.
“Don’t just take the doctor’s or consultant’s word.
“I came across Future of Downs through Facebook and it is a brilliant group. It is like a family community.
“Now I have Lola, I would not change her for the world.
“Lola has enriched our lives so much and we would not have her any other way. Her siblings adore her.
“I think the world would be a much poorer place without people with Down’s Syndrome and I would hate that to be the outcome of this new test.
“Lola has changed me as a person. She is just amazing.
“Each day, we celebrate the smallest of achievements. Lola is just so happy.
“I did ask myself in the beginning, ‘why me?’ but now I feel guilty I ever thought that.
“I recently asked my son Shaun: ‘What do you think the world would be like without Down’s Syndrome?’ and his reply was simple: ‘Boring.’
“I then asked if he’d ‘change Lola’ and he said: ‘Why would I? She’s so funny.”
“I am so glad I was ignorant and didn’t have a test for Down’s Syndrome when I was pregnant and ended up on a journey I had no idea about and that we have our wonderful daughter Lola.”