Against All Odds.

A story with a happy ending.

Taken an article from Best written by Kaya Terry

“As my due got closer, Ellie moved around constantly and got stuck on her side. Subsequently, I had a cesarean on 18 December 2001 as the doctors were worried about her being tangled in the cord.

But once she was delivered, everything changed. There was no cry, and the midwife took her quickly to the side – the glimpse I did catch showed her purple body – the cord was tangled around her neck. My body was frozen with fear, I had a desperate urge to see her. Goosebumps covered my arms.

Then a few moments later, after she was revived, the room went quiet. ‘Is everything okay?’ I said, but it came out as a whisper. A midwife turned and bluntly told me, ‘Oh, we think she may have Down’s Syndrome, but we’re not sure.’

I lay there helpless as doctors stood with their backs to me with my baby, who was still completely silent.

I was eventually wheeled to a side room and Ellie was brought in by the midwife. It was the first time Mark, and I were able to look at her. ‘I can’t see anything that looks different,’ I told Mark, carefully examining her perfect little face.

We stared at her and stroked her tiny hand, but still had no idea what was going on. I asked if my mum could come in to see us – but was refused. Four hours later, a team of doctors and nurses came into the room. One male pediatrician held Ellie, who only weighed 6lbs, and said: ‘Ellie has got Down’s Syndrome. She won’t walk, she won’t talk, and she will not go to university.’

Less than five hours old, a newborn and she was being written off.

I wanted to speak, but no words came out. The doctor pointed to some leaflets which offered further information about the condition before leaving. One nurse sort of apologised on his behalf, and another said: ‘Do you want to leave your baby here like the other mother did?’

Looking at Ellie, who was swaddled in her cot, I felt detached from her.

A bleakness fell over me and with all the negativity surrounding us at the hospital, I wondered, ‘What’s the point in anything?’ If a doctor didn’t believe my child had a future, then how could I?

The next day Mark and I were taken with Ellie to Great Ormond Street Hospital. Fifty percent of babies born with Down’s Syndrome have heart defects…

…At five months old, Ellie had open-heart surgery, and I was overcome with emotion. The thought of losing her was too much to bear. I realised I’d loved her all along; I was just too scared to admit it because medics had written her off before she’d even started. She was so fragile, but after 10 hours, the surgery was complete. She was a fighter, and I loved her dearly…

At 18-months she defied the original doctor and started walking and we used Makaton – a sign language – to help her communicate until she could talk. She attended a mainstream nursery, and her confidence grew. She met her milestones, getting stronger by the day. Once she reached reception, she’d taught herself to read as she loved books. ‘She’s our own little Matilda,’ I joked to Mark. I could see how determined she was, and I knew she was going to be anything but ordinary.

By age five, in 2007, Ellie would pretend she was doing a catwalk in our living room, doing her best swagger, and twirling at the end. Whenever we’d go to the supermarket, she’d look at the luxury fashion magazines and say: ‘I’m going to be in there one day.’

As she got older, she begged to join a modelling agency, and by 2017, her dream came true when talent agency, Zebedee (specialising in models with disabilities) appeared on ITV’s This Morning saying they were looking for new talent. I signed Ellie up, but I didn’t know if anything would come of it.

But lots of great things came from it. In June 2018, Ellie was cast for a Superdry Christmas ad. When we found out, we both screamed. Since then, she’s worked with a list of brands including Nike, Gucci Beauty… She even launched Mattel’s first Barbie doll with Down’s Syndrome, appeared on the cover of British Vogue, and has released a book. I wonder what that doctor would say now?..”

Ellie myth busting for Mencap

#EllieGoldstein #DownSyndrome #inclusivitymatters

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