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.
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 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 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 the world 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…
I then 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 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.
Michelle Clark, 45, lives in Cambridge in England.