Grimacing, I tried to ignore the icy gel being smeared across my stomach. ‘OK?’ my husband Richard, 56, whispered and I nodded. I was 12 weeks pregnant with our longed-for baby and having our first scan.
I was a jumble of emotions as I stared at the monitor – excitement, fear, worry, and joy. Then the blurry outline of a tiny baby appeared among the swirl of black and white dots and I gasped. ‘That’s our baby,’ I said, my voice catching.
Every new mum-to-be is thrilled to see her unborn child for the first time. But our baby had been conceived with IVF after many months of trying. To see a little heartbeat flickering away was simply a miracle.
But at the end of the scan, the sonographer looked serious. ‘The nuchal fold is bigger than normal,’ she said. It was a possible indicator that the baby had Down’s Syndrome. We were told we could have an amniocentesis a few weeks later to know for sure – but that carried risks of miscarriage. Shocked, I went home numb, clutching my still-flat stomach.
‘I don’t want any more tests,’ I told Richard later. I loved our baby already and felt so close to the little life growing inside me. So we decided that, even if the baby did have Down’s Syndrome, we wouldn’t do anything about it. This child was wanted and already a part of our family.
I enjoyed the rest of the pregnancy, which was problem-free. But, eight weeks before my due-date, I went into labour.
What followed was a blur of doctors, midwives and specialists, but then they placed our baby son on my chest for a brief few seconds, and I was elated. He was beautiful and looked perfect.
But he had a blocked intestine and was whisked away for an operation. As he was taken off to theatre, my arms already ached, missing my new baby. We named him Freddie.
The doctors confirmed he had Down’s, but we had prepared ourselves for that. ‘It doesn’t make any difference,’ I said. For the next two months, we were at the hospital with Freddie as he recovered. When we were allowed to take him home, I was so happy.
I spent hours just staring at him as he slept, or tickling him to see the hint of a smile. He was gorgeous, but at eight months we discovered he had an undeveloped windpipe and he was taken back into hospital – this time for five long months. He could feed OK, but needed surgery to widen his windpipe and a tracheostomy to breathe properly. I slept at Freddie’s side in a hospital chair. There was so much worry about his health that we didn’t have time to think about him having Down’s. ‘All I want is him home,’ I said.
Our boy with the big personality
Finally he was well enough. Stepping through the front door, it felt good to be back in our house in Surrey, UK, and to be a family at last. ‘Welcome home Freddie!’ Richard and I said, kissing his soft, chubby cheeks. To be a proper mum after all this time felt incredible but, once the euphoria died down, we suddenly realised life wouldn’t be easy.
Because of Freddie’s tracheostomy, we had to be extra vigilant with hygiene, changing his dressings and tubes frequently. At night he needed oxygen and we’d often tiptoe into the room in the small hours just to check on him.
Gradually, we settled into a routine. ‘Let’s focus on getting to know him,’ I said. He soon showed his big personality. Strong-willed and boisterous, he loved to giggle and as he got older he became so affectionate and loved nothing more than kisses and cuddles.
The fact that Freddie had Down’s Syndrome wasn’t something we ignored. We often talked about it if the subject came up, but we’d spent so much time fighting to keep him alive that it became secondary. He was here – that’s what mattered. We were tired a lot of the time but we were happy, the three of us. Then a familiar longing came over me. At first I tried to ignore it, but it grew stronger. When Freddie was two, I told Richard: ‘I’d really like another child.’ He agreed and so we tried IVF again. It failed. I was crushed, and as Richard hugged me I made up my mind. ‘I don’t think I can go through that again,’ I said. He nodded. The roller-coaster of having a baby with Down’s Syndrome, his fight for survival and now this – I couldn’t face another round of hope followed by disappointment. But I still wanted to be a mum again…
One night when Freddie was in bed, Richard and I sat talking. I took a deep breath. ‘What about adoption?’ I asked. We had discussed it before as a potential option. Richard was positive and nodded. ‘Let’s look into it,’ he said.
Lying in bed that night, as my thoughts whirled, an idea kept coming into my head. Some people might have thought it was strange, but to me it seemed the most obvious, normal decision in the world. I shook Richard awake. ‘I think we should adopt a child with Down’s Syndrome,’ I said.
He didn’t flinch or seem shocked. In fact, he nodded and agreed. We talked for hours. To us, it seemed the most natural thing we could do to adopt a child just like Freddie. Some people might have thought we were mad to risk the health problems often associated with the condition. But the truth was, I wanted a child with Down’s Syndrome.
The whole journey with Freddie, from conceiving him to seeing his strength as he fought to survive, to bringing him home and seeing his personality unfold – it had all shown me what a positive experience it could be.
‘If there are other children out there just like Freddie, it’s the only answer,’ I told Richard.
We contacted adoption agencies and began a long period of assessment. Finally, after weeks of interviews and counselling, we were shown some pictures of children who needed adopting.
One was a baby girl who had Down’s Syndrome. She’d been given up at just a few days old. My arms yearned to hold her just looking at her picture.
We applied to adopt her and a few weeks later we went for a panel interview. After it was over we paced up and down outside the room, waiting for their decision. When they called us back in, my heart was crashing in my chest. We sat down and an official began speaking and I heard some words: ‘You can adopt her…’ Joy washed over me. We’d been accepted to be her new family! And we hadn’t even met her yet.
A few days later, Freddie, Richard and I arranged to see her at the foster home where she was being looked after.
I was nervous while the foster mother went and fetched the baby – our new little girl. ‘She’s nine months,’ said the foster mother, lowering her into my arms. I stared down into the baby’s eyes. ‘Hello,’ I said. I felt her soft warmth, breathed in that adorable baby smell. She blinked back at me and grinned.
For the next week we went every day to see her.
I watched Freddie, who was four, gazing, amazed by this beautiful baby girl. He loved visiting her. I’d make her meals and dress and bathe her – and Freddie would watch, fascinated. He couldn’t talk properly, but he’d toddle over and cuddle her or copy the gurgling sounds she made. I smiled to Richard. ‘He likes her,’ I said.
Finally, after a week of getting to know her, we were told we could take the baby home. She had her birth name, but we decided to call her Mimi.
Settling into family life
Mimi settled in easily. She had a mild heart problem but would only need to see a consultant every two years. I’d carry Mimi in a backsling and push Freddie in the buggy and we’d go for days out to the park. I was so happy. I might not have given birth to Mimi but it wasn’t long before I felt exactly the same way about her as I did about Freddie. It was amazing. I loved her totally. She was our daughter just as much as Freddie was our son.
But when we went out, I’d see strangers smile apologetically, as if to say, ‘That poor woman, she has two children with Down’s Syndrome…’
So I’d quickly correct them. ‘Mimi is adopted,’ I’d say. It wasn’t that I was ashamed or that they should feel sorry for me. I wanted people to see we’d chosen to take on another child with Down’s Syndrome. It was not an unfortunate thing, it was something we’d planned.
And I soon realised our decision to give a home to a child with Down’s Syndrome was not just to add to our family. We were also making a mini statement to the world: to have a child with Down’s Syndrome was not a disaster or something we never wanted; it was something we’d actively sought out. Something to be celebrated.
Mimi is now four and Freddie eight. Last year he finally had his tracheostomy removed and started school, along with Mimi. We’re lucky. Mimi and Freddie are so loving and affectionate – with strong-willed personalities! Life isn’t easy. But it’s fulfilling.
The thought that children are given up for adoption or even terminated because they have Down’s Syndrome still upsets and angers me.
But my anger is not directed at the parents who make that heart-wrenching decision, but at society for imposing that feeling in the first place. I hope what we have done shows people that having a child – or two – with Down’s Syndrome is nothing but a positive thing. Our second IVF failed but now I am glad that it did because it led us to Mimi. I wouldn’t change our two children for the world.
Amanda Hazell, 45, of Wallington, Surrey, UK.
Amanda wishes to thank PSDS, a support group for families of children with Down’s Syndrome. To learn more visit: http://www.psds.info/