The issue of Down’s Syndrome has hit the spotlight after a surrogacy scandal where it was claimed that an Australian couple abandoned a baby boy born withthe condition - but kept his twin sister.
Aasma Day talks to a Lancashire couple who have twin boys who both have Down’s Syndrome and find out why they wouldn’t change their duo for anything.
When people spot twin babies being pushed around in a pram by their parents, the cliches “Double Trouble” or “You’ve got your hands full” often fall from their lips.
However, Emma and Dave Banks-Lowe who have identical twin boys Arthur and Alfie, don’t consider their boys to be “double trouble” but think they are doubly lucky and twice as blessed.
And when they proudly tell strangers that their boys are one in a million, they are telling the truth as with twin pregnancies, there is only a one in a million chance of both twins being born with the genetic disorder Down’s Syndrome - and Arthur and Alfie are among that rare number.
With their beaming smiles and joy for life, Arthur and Alfie instantly melt the hearts of everyone they meet as they gleefully wave and blow kisses at them.
Emma and Dave are fiercely protective of their sons and say the fact they have Down’s Syndrome makes them love them even more, not less.
And they are angered by the negativity that surrounds Down’s Syndrome - and frustrated and saddened by stories such as the plight of baby Gammy who it is claimed was abandoned by an Australian couple who paid a Thai surrogate mother to have their children, but only took Gammy’s healthy twin sister after realising he had Down’s Syndrome.
Emma, who lives in Salwick with Dave and who also has sons Tom, 15, Harry, 10 and Benjamin, nine, says: “There are all sorts of mixed stories coming out about the couple from Australia who are believed to have left behind baby Gammy who has Down’s Syndrome but taken his healthy twin sister Pipah.
“Some reports are saying that the couple claim they were forced to leave baby Gammy behind after the surrogate mum threatened to keep both children and other reports say the dad has said they would have terminated the embryo if they had known about the condition earlier.
“If it is true that this couple have chosen to abandon their baby because he has Down’s and taken his twin sister who doesn’t, that is terrible.
“They are twins and should be together.
“When I heard this story, my first feelings were that I wanted to go out there and get baby Gammy and bring him home to us.
“I would have him now. If there was a way of bringing him home to us, I would. We would just have three boys with Down’s Syndrome and love each of them completely.
“But the story also made me angry because it highlighted all the negativity surrounding Down’s.
“Until you have a child or children with Down’s, you don’t realise how much pleasure they bring you and how they change your life for the better.
“I can understand that if you live in a country where you have to pay for health care, it could be a financial worry.
“But they are so worth it for the pleasure they bring into your life.
“We are lucky in this country because we have the NHS.”
Dave, who is a mechanic for bus firm Stagecoach, adds: “If this couple have left their baby simply because he has Down’s, I feel sorry for them because they are going to miss out on so much.
“Our two boys have more love in them than anyone I know by a long way.
“Even when they were tiny babies, you would get such a look of love and appreciation for the smallest thing you would do for them - anything from wiping their nose to giving them a bottle.
“Arthur and Alfie bring us so much joy and pleasure and we love everything about them.”
Emma and Dave, who have been together for four and a half years, decided to have a baby together - and ended up with twins Arthur and Alfie.
The couple did have a daughter Molly in March 2011 who had Down’s Syndrome and was born asleep.
Emma recalls: “For some reason, even though we had Molly who had Down’s, I did not think our twins would have Down’s. The pregnancy went smoothly and as we were having twins, we were scanned more often.
“No one really mentioned Down’s to us apart from at the 12-week scan when they said there was a possibility of a chromosome disorder and mentioned a whole list of things, including Down’s and kidney problems.
“In twin pregnancies, there is a one in a million chance of both twins being born with Down’s Syndrome.
“You can have one twin with Down’s, but it is very rare for both of them to have it.
“As I knew the chances were so remote, I did not think our twins would have Down’s.”
The couple discovered on their 20-week scan that they were having twin boys and Arthur and Alfie were born by caesarean section at 36 weeks, weighing 6lb and 6lb 12oz.
Alfie had breathing difficulties and was rushed straight to the neonatal unit where he was put on an incubator and Arthur was taken with him.
Emma says: “The doctor then came to see us and told us they wanted to carry out tests on the boys because they thought they had Down’s.
“Even at this stage, Dave and I did not think they did.
“With babies, you cannot always tell they have Down’s from their facial features.
“Dave and I looked at the boys and did not for one minute think they had Down’s Syndrome.”
Dave remembers: “One of the doctors said that the boys had short, fat fingers which is one of the signs of Down’s, but I pointed out that I also had short, fat fingers.
“We were not bothered about the boys having Down’s, we just thought they didn’t have it.”
The tests were carried out and the following day, they told Emma that both boys had Down’s Syndrome.
Emma recalls: “I just was not expecting them to come back and tell me they both had Down’s. I had been Googling overnight and seen how rare the chances were.
“I did have a little cry when I first found out the boys had Down’s, but I wasn’t crying for me as I was not bothered about them having the condition.
“I was crying for the boys as I know that society can be a cruel place.”
Emma and Dave brought their newborns home and admit that at first, they felt as though they had been abandoned.
Emma explains: “We came home from hospital with twins who had been diagnosed with Down’s Syndrome, but we had no help or anyone come to see us for the first couple of weeks.
“But now we cannot fault the support we are getting in any way as it is wonderful.”
Some of the extra challenges Emma and Dave faced because of Arthur and Alfie having Down’s included going for additional appointments as both boys had heart murmurs.
Children with Down’s Syndrome have poor muscle tone so the boys have daily physiotherapy as well as going to Blenheim House Child Development Centre in Blackpool for physio every few weeks.
Dave says: “The poor muscle tone affects everything including feeding and the boys have only just come off four-month baby food.
“We are trying them with soft foods and they can do soups, biscuits, pasta, yogurt and Milky Bars, but cannot manage toast as yet.
“They have tried chips and curry and love mushy peas, broccoli and fruit.”
After Arthur and Alfie were first diagnosed with Down’s, Emma and Dave did not tell other people at first.
Emma says: “I did not even tell my mum and dad that the boys had Down’s Syndrome until they were about six months old.
“My mum did not believe me. She kept saying: ‘Are you sure?’
“We did not make a big deal out of it.
“We had to get our heads around it ourself before we could tell other people.
“We just wanted to find out feet.”
Dave says: “A lot of the time, people just think Arthur and Alfie are younger than they are.
“The boys are now two but are only just crawling. They are not walking yet but are getting good at climbing.
“They still wake up during the night and are still on baby milk and sleep in cots.
“We have only just started putting them in high chairs as they were too floppy before.
“Their development is a lot slower and it is just a case of waiting to see what the future will bring.”
Emma and Dave are fiercely protectively of Arthur and Alfie and are disappointed by the negativity which surrounds Down’s Syndrome.
Emma says: “I do feel there is a lot of negativity surrounding Down’s Syndrome, especially during pregnancy.
“There are all these tests they push you to have so people can abort the baby if it turns out it has Down’s.
“I was watching a daytime television programme and there was an older woman on there saying that she would have an abortion if she knew she was having a baby with Down’s.
“It makes me feel very angry and sad to hear things like this.
“We have encountered some negativity towards the boys ourselves.
“I was once in a supermarket and an old woman came over to look at the boys and said: ‘Twins’. But after peering at them, she said: ‘Oh, one of them’ then walked off.”
Dave says: “We have also had negativity from some family members and we have nothing to do with them.
“We only want people in our lives who accept the boys for who they are. We are very protective of them.”
Emma adds: “I think the younger generation are more understanding and accepting.
“Tom’s, Harry’s and Ben’s friends are wonderful with the boys and adore them.
“They would all gather around their pram and ask questions and we prefer that to people just staring.”
Emma and Dave met a family called Grice at Blenheim House in Blackpool and say they could not have coped without their support and advice.
Emma says: “When you have a child or children with Down’s or another disability, you leave the world of normality and start living in this different world of disability.
“When I met Mandy, Neil and Katy Grice, I was going down a rocky road as Arthur and Alfie were around 10 months old and I felt we weren’t getting anywhere as they were still in baby seats and were on bottles and not eating and I did not know where to go or what to do.
“Mandy was brilliant and so supportive with her advice and experience.
“There is nothing to steer you through it all. You have to find it yourself or stumble across it.”
The couple say most people are smitten with their boys as soon as they meet them.
Dave says: “Everyone who sees them just instantly falls in love with them.
“When we went to register their births, it took us 45 minutes to walk down the High Street in Lytham because everyone wanted to stop us to coo over them.”
Emma says: “Some medics focus too much on the negatives of Down’s.
“But people with Down’s Syndrome can live a full and normal life and there are those who are professional violinists, solicitors, actors and horse-riders.
“They can do anything they want and focus on it 100 per cent.
“Our boys are happy, gorgeous and are perfect in so many ways.
“They are saying words like ‘mum’ and ‘dad’ and communicate to us through Makaton which Mr Tumble uses.
“The boys love going swimming and playing and going for days out with us.
“I hate it when some people say: ‘I’m sorry’ when they find out the boys have Down’s.
“There is nothing to be sorry about as we love them just as they are.
“Arthur and Alfie are one in a million.
“I don’t like the word: ‘Down’s’ because there is nothing down about them.
“I would not give them up or change them for the world, but I would change society for them.
“I am dreading them getting older as I know what some people can be like.
“We love everything about them and feel proud and honoured to have them.”
Dave says: “We know as they get older, things will get harder, but we don’t care.
“We will ride every single rollercoaster along the way.”