The big story

Michelle Clark was fed up with the way peo­ple spoke about her baby. It was time for Mara to take cen­tre stage...

Friday - - Contents - Michelle Clark, 45, lives in Cam­bridge in Eng­land.

A mother’s fight to change per­cep­tions of chil­dren with Down’s syn­drome.

Stand­ing in the bath­room, preg­nancy test in hand, I waited ner­vously for the re­sult. It was a day in Jan­uary 2012 and 4am, but I couldn’t sleep. My part­ner Ben, 36, an HR ad­viser, and I had been try­ing for a baby for six months, but be­cause I was 42 we thought it might not hap­pen. We’d only just come back from a hol­i­day to see my fam­ily in Sydney, Aus­tralia, but I had an inkling that I was preg­nant.

I’d been ly­ing in bed for a while, won­der­ing if there re­ally was a new life grow­ing in­side me. Even­tu­ally I got up and padded into the bath­room where I had a box of tests. The minute in which I waited for the re­sult dragged by – then even­tu­ally I looked down, steeling my­self for another neg­a­tive. But there, bold as any­thing, was a blue line. Pos­i­tive! I rushed straight back into the bed­room. “Ben, Ben,” I said, shak­ing him awake. “I’m preg­nant!”

“What?” he asked, half asleep. I was jump­ing up and down.

“I’m preg­nant!” I re­peated, and sud­denly Ben was awake, leap­ing out of the bed to hug me. To­gether we did another test to be sure, and that one was pos­i­tive too. “We’re hav­ing a baby,” we laughed, cling­ing to­gether.

Nei­ther of us could sleep that night and first thing the next morn­ing we went to the doc­tor. He had reser­va­tions when we told him I was preg­nant be­cause of my age. There was a higher risk of com­pli­ca­tions, he ex­plained, and re­ferred me to hos­pi­tal for blood tests. I was just so happy to be preg­nant that I didn’t pay much at­ten­tion

to the test be­ing done. But later I was called back for the re­sults: There were con­cerns about our baby.

The num­bers were cruel – a one in seven chance of Ed­wards syn­drome, a chro­mo­so­mal dis­or­der that dis­rupts the baby’s course of devel­op­ment, and a one in 79 chance of Down’s.

“We’d like you to have an am­nio­cen­te­sis,” the doc­tor said. It was a test where they put a long nee­dle through my stom­ach into my womb to take cells from the fluid sur­round­ing the baby. It would tell us if our baby had an ab­nor­mal­ity but car­ried a risk of mis­car­riage. “No,” Ben and I said in uni­son. We didn’t want to risk los­ing him or her, and so our minds were made up. “What­ever will be will be,” I said. I tried not to dwell on the test re­sults. I was elated we were go­ing to be­come a fam­ily – and at my 16-week scan we were told we were hav­ing a lit­tle girl.

We de­cided to call her a name we both loved, Mara, and over the fol­low­ing weeks we pre­pared the nurs­ery in our home in Cam­bridge in Eng­land for the ar­rival. I also pre­pared to leave my job as a se­nior project man­ager at the same com­pany Ben worked for.

I was lucky, my preg­nancy was easy. I didn’t have any morn­ing sick­ness and the only prob­lem was the fact that I needed a scan ev­ery two weeks to make sure the baby was OK. They no­ticed the baby’s fe­murs were short, which could be sig­nif­i­cant for Ed­wards or Down’s syn­drome. As ba­bies with Ed­wards usu­ally die be­fore birth, all our fo­cus was on that.

On June 27, 2012, Mara was de­liv­ered pre­ma­turely by C-sec­tion. I heard her be­fore I could see her – she let out a cry that made me burst into happy tears. Doc­tors wrapped my lit­tle girl up and low­ered her down so I could have a kiss.

At just 3lbs 3oz (1.45kg) she was tiny – I could only see her nose and cheeks peek­ing out from un­der her knit­ted pink hat, but she looked per­fect. Ben had a quick hold of our daugh­ter be­fore she was rushed to the spe­cial care baby unit to be mon­i­tored.

That evening I was able to see her in her in­cu­ba­tor.

As I held her lit­tle hand, I felt a rush of love. “She’s amaz­ing,” Ben agreed with me.

The fol­low­ing day, doc­tors sat us down. “We think she has Down’s syn­drome,” they said.

“OK,” I re­sponded. I wasn’t fazed at all and nei­ther was Ben. We’d done some re­search while I was preg­nant and we knew it wasn’t as scary as it

I tried not to dwell on the test re­sults. I was elated we were go­ing to be­come a fam­ily

sounded. We were more con­cerned about the fact she was seven weeks pre­ma­ture and what that would mean.

The next four weeks were spent in the hos­pi­tal while Mara got stronger. Doc­tors con­firmed she didn’t have Edward’s syn­drome, so we were re­lieved. She did have Down’s syn­drome but to us that meant she was ex­tra spe­cial. She also had two holes in her heart, but by her due date, one hole had self-closed and the other closed by De­cem­ber last year, leav­ing her with a fully healthy heart.

Ben’s fam­ily doted on her, as did my fam­ily who vis­ited from Aus­tralia.

I was thrilled when we could take her home. She looked like a lit­tle doll in her pram.

But we were up against prej­u­dice from the word go. ‘The Down’s baby” was how doc­tors and health care pro­fes­sion­als re­ferred to Mara. “She’s called Mara,” I said firmly. When we were out shop­ping, Mara would al­ways at­tract lots of at­ten­tion be­cause she was so tiny. She was just

How rude were these strangers! Was the woman sug­gest­ing I needed some kind of com­pen­sa­tion?

un­der 2.3kg when she left hos­pi­tal but peo­ple al­ways saw her con­di­tion be­fore they saw my lit­tle girl.

“She doesn’t have it too bad does she?” a woman said, re­fer­ring to how Mara looked. At first I didn’t re­spond, I was too shocked. How rude were these strangers! Was this com­ment sug­gest­ing I needed some kind of com­pen­sa­tion? Then I be­came an­gry. “She’s per­fect,” I said.

I know she didn’t mean to be rude but it was an ig­no­rant com­ment and frus­trat­ing. Within an hour af­ter that, a woman around my age and her mother looked in dis­gust at Mara. I was fu­ri­ous and had to bite my tongue not to say any­thing.

By the time she was six months old, I was start­ing to get re­ally riled. Even peo­ple who knew Mara’s name would still call her “the Down’s baby”.

In March last year Ben and I got mar­ried, with Mara as our flower girl. She looked gor­geous in her cream top and purple tutu.

As Mara got older she de­vel­oped a real char­ac­ter. She had a smile that lit up the room and she was al­ways wrig­gling around when songs came on the ra­dio. She was a real dancer! She loved choco­late and di­ges­tive bis­cuits. Her favourite TV show was In The Night Gar­den and she was at her hap­pi­est lis­ten­ing to the ra­dio and danc­ing to songs by One Di­rec­tion and Katy Perry.

Mara was Mara yet peo­ple still called her the “Down’s syn­drome girl”. Fury rushed through me ev­ery

time. Yes, she had a con­di­tion, but that didn’t de­fine her – she was so much more than that. She was funny, clever, happy and af­fec­tion­ate. She was my daugh­ter with her own unique per­son­al­ity not just a statis­tic.

I de­cided to take ac­tion. Af­ter chat­ting to Ben and a group of friends who had chil­dren with Down’s syn­drome, I took a pic­ture of Mara. She was play­ing peek-a-boo be­hind the cur­tains and looked adorable. I made it into a poster, writ­ing: ‘I am Mara. I have Down’s syn­drome. I am not Down’s syn­drome. I am Mara.’

The poster was all about help­ing peo­ple come to a bet­ter un­der­stand­ing of what Down’s syn­drome is. It wasn’t about point­ing fin­gers and say­ing to peo­ple, “You said it wrong”.

It went up on Face­book but was also used by par­ents around the­world as an in­for­ma­tion and aware­ness post­card.

In Oc­to­ber last year I set up a Face­book group called ‘Lose the La­bel’ and put up the poster of Mara.

Friends and fam­ily liked it and a cou­ple of peo­ple shared it.

Those peo­ple must have shared it too, be­cause over the next cou­ple of days my phone didn’t stop beep­ing with no­ti­fi­ca­tions of more likes and com­ments on Mara’s pic­ture. Our mes­sage was reach­ing out to peo­ple…

Ithen did another poster of a lit­tle girl called Lucy and then a woman in Aus­tralia called Re­becca con­tacted me via Face­book ask­ing how she could get in­volved. She wanted her lit­tle boy Char­lie, then a year old, to be part of the ‘Lose the La­bel’ cam­paign and he be­came the third poster boy. By now the likes on the group were go­ing up and up and I was re­ceiv­ing mes­sages from all over the world telling me what a good idea it was and that their

The cam­paign took off but I didn’t in­tend to start a revo­lu­tion – I just wanted peo­ple to see Mara first

child had also had their con­di­tion put be­fore them as a person.

Now the group has over 8,100 likes. It’s amaz­ing to think that around the world, fam­i­lies are shar­ing Mara’s mes­sage.

I didn’t in­tend to start a revo­lu­tion – I just wanted peo­ple to see Mara first. The cam­paign has spi­ralled and Mara is the poster girl, along with so many of her friends.

The re­ac­tion peo­ple have to Down’s syn­drome will af­fect Mara for the rest of her life – I used to think there was noth­ing I could do about that. But Mara is show­ing the world they should think twice.

Her story has ap­peared in lots of lo­cal news­pa­pers, as well as na­tional mag­a­zines and around the world.

Mara is two now. Too young to un­der­stand about the cam­paign yet, but I show her the pic­tures and she points and smiles when she recog­nises her friends.

I can’t wait un­til she is older so I can tell her all about it, and how she helped peo­ple un­der­stand the im­por­tance of us­ing the right words.

Mara is Mara. She is not Down’s syn­drome. She’s so much more.

When Ben and I got mar­ried, Mara was our beau­ti­ful flower girl

We weren’t fazed when we found out Mara had Down’s as we had done our re­search

I felt a rush of love when I first saw Mara

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