Emma discovered she was expecting her remarkable twins – one of only 29 sets worldwide – weeks after withdrawing life support from her late daughter.
A mother has relived the bittersweet moment when she discovered she was pregnant with her one-in-a-million Down’s syndrome twins – one of only 29 sets worldwide – just weeks after withdrawing life support from her baby girl, who also had the condition.
Little Molly was just five-months-old when her mum, Emma Mullard, 36, was forced to say goodbye in August 2011, as she had a multitude of Down’s syndrome related problems – including a heart murmur and under-developed lungs – and a machine was keeping her alive.
When Emma, of Preston, Lancashire, fell pregnant again, she had no idea the twins she was carrying also had the condition, but felt sure it would not strike twice, with the Down’s Syndrome Library saying it occurs in only one or two in a million twin births.
She said: “When I found out I was having them I thought to myself, ‘They’re not going to have Down’s syndrome, which is caused by an extra chromosome, because it’s too unlikely.'”
Emma – who is mum to Harry, 14, Ben, 13, Arthur and Alfie, six, and Elsie, three – discovered at her 11 week scan, nine weeks after taking a pregnancy test, that her twins were showing signs of a developmental problem which doctors were unable to diagnose.
When they were delivered by C-section at 36 weeks on July 4 2012 at Royal Preston Hospital, weighing 6lbs and 6lb 12oz, she saw their unmistakable features and knew they had Down’s syndrome – which typically causes mild learning disabilities and certain physical characteristics, but can make people more prone to health problems like heart and thyroid disorders.
“When medics told me that they both had Down’s syndrome, I thought I was going to lose another child all over again, it was so scary,” said Emma.
“Even now I panic when the kids have a cold or anything. When you’ve lost a child, you know how quickly they can be taken away from you.
“Molly died in hospital, she didn’t even come home. I knew she had Down’s syndrome when I was pregnant, but she was born with everything possible connected to it wrong with her.”
She said: “If she was still alive, she would have been coming up to eight and living off a machine, but I didn’t want that for her. The hospital did everything possible to keep her alive, but it just wasn’t enough, so we removed life support and said goodbye.
“I keep her grave all pinked up for her, so that’s really nice, but it’s still heart-breaking to think about her.”
Emma had just finished teacher training when her twins – who also have autism, weak muscle tone, cannot speak and use walkers or wheelchairs to move around – were born, but quit work in December 2012 to become their full-time carer.
Recalling their birth, she said: “I remember the midwife holding Alfie up and I saw the same features that Molly had. I knew as soon as they were born that they had Down’s syndrome.
“The medics swooped them away and my initial thought was that was the last time I was going to see them alive.
“When I finally got to hold them later that night, I scooped them both up and looked at them, vowing to look after them.
“I knew it was a long hard road ahead, but that I would do everything possible for them.”
Sadly, Emma and their dad split up shortly after their birth but, despite being a single mum and leaving her career to care for them, she adores her twins.
She said: “I do love my boys, but there are a lot of medical appointments and being a single parent is draining.
“But the twins are so worth it and I don’t regret having them in any way, shape or form. I absolutely adore them.
“Sadly, my ex-partner found it all very difficult and having them really changed our relationship, but that’s ok.”
Understanding Makaton, a simplified version of British sign language, but, sadly, unable to communicate themselves using it, Arthur and Alfie are thriving at a Preston specialist school.
Despite her love for them, Emma admits, however, that if she could wave a magic wand and make their disabilities disappear, she would.
She explained: “When they turn 18, they should be out clubbing, and I should be at home worrying about them, but that’s never going to happen.”
She added: “People say to me, ‘Don’t you love them as they are?’ And I absolutely do, but anyone who has a child with a disability would whip it away from them if they could.
“The oldest man in the world with Down’s syndrome is around 70 and I see adults who have died at 40 or 50, and that’s not old. It’s frightening to know that they could go that young. I don’t want to get old and have to bury my boys.”
Realistic about the effort required by parents of children with Down’s syndrome, despite saying she would never have terminated herself, Emma understands when some mothers do – especially as a new 99 per cent accurate test, which can detect the syndrome, has been available on the NHS since May 2018.
With government data showing that the number of terminated pregnancies in this category are up from 427 in 2007 to 655 in 2017, Emma said: “I don’t believe the new test will necessarily change anything.
“Even if I fell pregnant with another baby with Down’s syndrome now, I wouldn’t have an abortion, as I know I can cope, but some people can’t.
“What type of life will that child have if the parents can’t cope with it? It’s why we have so many children put up for fostering and adoption with disabilities, so it needs to be each person’s decision. There is no one right way.”
Fortunately, for Emma, who has adjusted her entire life to meet Arthur and Alfie’s needs, even changing dentist, as it was not wheelchair accessible, bringing up Down’s syndrome twins remains a joy.
She said: “Your social life does tend to flicker out and I can’t do anything on a whim anymore. I used to go camping every weekend, but I’ve bought a caravan and adapted it to their needs instead.
“Still, I adore my boys and I love being their mum.”
