The saddest gift: ‘A new baby – so my little girl won’t be lonely when her sister dies’
When May Williams found out her daughter was terminally ill, she made a moving decision…
When my baby girl was diagnosed with a terminal illness, I was devastated, like any mother would be. However, I made a decision that not every parent would make. I decided to have another baby.
It may seem inconceivable to some, but it was the only thing my husband, Julian, 52, and I could have done.
After we had our first little girl, Anya, now seven, we decided to give her a sibling. I fell pregnant and gave birth to Molly, full of smiles, in October 2012.
Anya immediately fell in love. She was the perfect big sister, insisting on helping me bath Molly and singing nursery rhymes to soothe her to sleep.
I couldn’t believe how perfect life was. We were so happy, it almost seemed too good to be true. And, it turned out, it was. While I was pregnant with Molly, I’d had very few movements, unlike the continual kicks from Anya. I’d put it down to Molly being a calmer baby, and when she was born, she was indeed content and happy.
But I noticed she didn’t wriggle about when I changed her nappy and her limbs seemed overly floppy.
Being a midwife, my instinct told me something wasn’t right. My health visitor assured me everything was fine but as the months passed and Molly still couldn’t sit up, our GP referred her to hospital.
After rounds of tests, when Molly was just a year old, a paediatrician at Sheffield Children’s Hospital gave us the devastating news that he was sure our little girl had spinal muscular atrophy (SMA) Type 1 – the most severe strain of the condition, which leaves sufferers with weak mobility and lifethreatening respiratory issues.
There was no cure – and only five per cent of children live past their second birthday.
At first, the news hovered in the air before hitting me suddenly – a body blow that took my breath away. And once the tears came, they lasted for days.
Poor Molly had no idea of the short future she faced. I was devastated for Anya, too. How would she cope without the little sister she was so devoted to?
Cruelly, Julian’s sister and mother had died in a car crash when he was just five years old, and losing his family at such a young age had never left him. Neither of us wanted that for Anya.
That was when we decided
to try for another baby. Not to replace Molly – no one could – but to make sure Anya still had a best friend to love and someone to grow up with.
But it wasn’t that simple. Tests had shown that Julian and I were both carriers of SMA, meaning our next baby had a 25 per cent chance of inheriting the condition.
It felt like we were being doubly punished. After many discussions, we agreed to try for another child, but if early-pregnancy tests showed they had SMA, I’d have a termination.
In April 2014, I discovered that I was expecting, and we were thrown into a further state of turmoil.
We now faced the possibility of losing two children in the space of a year. We didn’t tell anyone I was pregnant, and I tried hard not to think too much about the tiny baby growing inside me. Then, the next month, Molly choked on her own vomit and was rushed to hospital in an ambulance. Seeing her fight for breath, we were convinced we were going to lose her but, amazingly, she pulled through. Yet doctors warned us there’d come a time when our brave little girl couldn’t be saved. When I was 13 weeks pregnant, tests revealed our unborn son didn’t have the condition. But that was just another twist on our emotional roller coaster, as the following day, test results confirmed the paediatrician’s suspicions. Molly definitely had SMA Type 1.
By now, she was getting steadily weaker. She had to be carried everywhere and she couldn’t sit up in a standard buggy without slipping through the straps.
But when I gave birth to Edmund in December 2014, Molly was there to welcome him into the world.
Just like Anya had with her, Molly instantly fell in love with her brother and, as I placed him in her arms and Julian quickly grabbed his camera, we forgot about the awful cloud hanging over us, just for a few seconds.
Both Molly and Anya became mini mother hens to Edmund. They’d lie with him singing nursery rhymes and, as he grew, the three of them would all curl up to watch their favourite DVDs together.
But, as Edmund has become a toddler, their roles have been reversed. Molly will never walk, stand or sit unaided, so Edmund passes her toys if they’re out of reach and Anya occasionally feeds her sister.
Over the years, we’ve nearly lost Molly three times, the most recent being on New Year’s Day this year after she contracted a sickness bug and doctors warned us this was it.
As I sat by her bedside, holding her hand, I forced myself to start mentally preparing for her funeral. I thought about what songs would be played and what clothes Molly would be laid to rest in. But, by some miracle, she pulled through.
We’ve had the odd critical comment for our reasons for having Edmund, and friends of friends have labelled us ‘selfish’. But I refuse to let it affect us.
There are no statistics for children over the age of two with SMA Type 1, so we have no idea how long we have left as a family. It could be years, months or just days.
But, at 33, what I do know is, in many ways, we’re incredibly lucky. Molly has already defied doctors’ expectations and brings us so much happiness.
And when we do lose her, it will bring us comfort knowing Anya and Edmund will have each other. Neither of them will ever feel alone in life.
‘We’ve had critical comments for having Edmund, but I refuse to let it affect us’