‘My baby had the same condition as Whitney’s in EastEnders’
As Whitney’s unborn baby is diagnosed with Edwards’ syndrome in EastEnders, Katie Mainwaring, 37, from Milton Keynes, describes how her daughter died from the same condition
‘As I watched the heartbreaking scenes on EastEnders, where Whitney is told that her baby has a lifelimiting condition and won’t survive, I felt happy as well as sad.
Yes, it brought back the pain I felt when my own baby girl, Emily, died at just 26 days old. But it has also given me hope. Now that Edwards’ syndrome, also known as trisomy 18, is being talked about more openly, perhaps other parents will be better-equipped to deal with this awful diagnosis.The genetic condition means babies have an extra copy of chromosome 18 and usually live for less than a week.
My husband Ben, 45, and
I were enjoying my first pregnancy in 2011. Then, at around seven months, an extra growth scan showed signs our baby wasn’t developing as expected.
A senior consultant reassured me, “Your baby’s small but healthy. ”At the time that was a comfort, but now those words haunt me.
AN OMINOUSLY SILENT BIRTH
I was taken in for induction at 40 weeks. After days of labour I was given an emergency caesarean as the baby’s heartbeat was dropping. Our daughter was born in silence. I panicked, asking, “Why isn’t she crying? What’s happening?” She weighed only 4lbs 5oz. She was put on oxygen and, after giving her no more than a kiss to her forehead, she was whisked straight to the neonatal unit.
We agreed Ben should go home to get some rest. I sat there in shock. I’d just had a baby, yet I hadn’t even had the chance to hold her. “She’ll be cared for overnight, don’t worry,” the nurse said. “We’ve named her Emily,” I replied. “Please look after her.”
I felt so confused. Everyone was being positive, saying she was in the best place. I took their word for it and felt reassured as I tried to get some rest.
In the morning, Ben arrived with breakfast for me and we chatted as we ate, not realising the shocking news we were about to receive. A consultant and two nurses walked in. “Unfortunately, the features Emily has make us believe she has Edwards’ syndrome,” said the consultant. We’d never heard of it. He went on to explain that her hands were clenched and one of her ears hadn’t formed. “We believe that, internally, her heart isn’t complete and she’s currently on ‘foetal circulation’ so her heart and lungs won’t work the way they should now she’s been born.” We now know that for other babies, an injection can be given to make the aorta work properly, but because Edwards’ syndrome made Emily’s problems, as the consultant so bluntly put it, “incompatible with life”, this was declined.
“When foetal circulation stops, she will die suddenly,” the consultant said.“You may only have four days.”
He handed us a printout about Edwards’ syndrome and left. Our world fell apart.
We called our family, tearfully asking them to come to the hospital. It was a manic day of visits, frantic internet searches for answers and talks with the nurses. It was all surreal but I finally got to hold my baby in my arms.
It felt like a sick joke. How could I have had so many antenatal checks yet they never picked up the signs of – what we later discovered is – the second most common chromosomal syndrome affecting babies in the UK?
That day we had to sign papers agreeing that Emily would not be resuscitated when her time came. We decided to take our baby girl home and friends and family rallied round, collecting balloons and a cake.
Emily Elizabeth Mainwaring was christened at home and everyone got a chance to hold her and have pictures taken with her. We smiled and said she was like our own little celebrity. She was so perfect.
Who knew how much time we
would have to spend with our daughter? We couldn’t sleep. All we wanted to do was be with her and make precious memories.
But Emily surprised us all. Four days passed, then another week. And another. We asked ourselves if maybe the diagnosis was wrong. For the first time since she was born, we felt hopeful.
On day 20, my dad Kevin, 67, made a suggestion. “Come on, you’re exhausted,”he said.“Why don’t we go and buy one of those bouncers for Emily? You can’t hold her 24 hours a day.”
Making our way out of the store, he suddenly stopped and said, “Katie, she’s changed colour!”
KNOWING THE END IS NEAR
Scooping Emily up from her buggy and running out into the shopping centre, I could see she was grey. I sat on a chair and rocked her as the tears flowed.
“Can I call an ambulance?” asked a kind man who stopped to try to help, but I told him there was no point. There was nothing paramedics could – or would – do for my baby as we’d agreed not to resuscitate her.
As I held her, I felt Emily cough and she started to return to her usual colour. Back at home, they told us she was “forgetting” to breathe and when this happened we could tap the soles of her feet as a “reminder”.
In the following days it got to the stage when we were doing this more and more and Ben and I knew that the time was close for Emily to leave us.
On Mother’s Day, the three of us sat in bed as I opened my very first card.
“You can’t leave me now, Emily,”I sobbed.“Not today of all days.”
That night, as she lay between us, Ben woke me gently to tell me Emily had finally gone. Nothing can explain the devastation we felt, but we took some time to be alone with her before ringing family and the nurses.
When the funeral directors arrived, we asked my dad if he would be the one to hand her over. We literally couldn’t bear to let our baby go. Later, I went to the funeral home twice a day, so I could sit quietly, reading aloud from Winniethe-Pooh books as Emily lay in her little Moses basket. We chose a tiny wicker casket, draped with pink and lemon gerbera flowers, and said goodbye at a funeral service that I can barely remember, such was the grief I felt. My body ached to be with her, like a physical pain. Mourners contributed when we said we’d like to raise funds for the Children With Complex Needs nurses. As I thought of my tiny Emily in those first days, wearing too-big, second-hand babygrows supplied by the hospital, I thought we could help with supplies.
Within weeks, we’d raised
‘Who knew how much time we’d have with Emily?’
so much money I realised I should register as a charity. Emily’s Star was named after the real star that some dear friends had dedicated to her. To date, we’ve raised more than £800,000 and it’s given me a place to channel my grief.
Two years later, I became pregnant with our son Jake, who is now nine. Of course, I was nervous but I declined all testing as there were risks – and I’d have continued with my pregnancy regardless. Thankfully, there were no complications and Jake is the most loving, kind and thoughtful boy. He talks about Emily all the time and she’s very much part of our lives.
So now, difficult as it is to turn on EastEnders and watch Whitney go through the pain I experienced, I’m thankful it’s raising awareness. More than anything, it’s important to me that doctors don’t use the phrase “incompatible with life” when talking about children with life-limiting conditions. Emily had a life. She was with us for 26 days – and she made a difference.