Stare all you want!
My Leo’s different... but he’s beautiful By Jen Streather, 34, from Swadlincote
Finding out I was expecting in October 2012 was a dream come true.
I ate healthily, exercised moderately, and by 32 weeks my bump was blooming. A textbook pregnancy! Until, during a routine scan, the sonographer hesitated...
‘I need a second opinion,’ she said, leaving the room. Something’s wrong, I fretted. My partner squeezed my hand as a doctor came in and examined my scans. Then... ‘The measurements of your baby’s head aren’t adding up,’ she told us.
Three anxious days later, I had another scan at the Fetal Medicine Unit.
We’d resisted finding out the sex beforehand, but now I needed to know. ‘What am I having?’ I asked. ‘It’s a boy,’ the doctor said.
I managed a smile.
A little boy.
But she suspected he had craniosynostosis – where a baby’s skull doesn’t grow properly and their head becomes an unusual shape. I was heartbroken. The doctor explained that some cases are mild and don’t need treatment. Yet others could be more severe, and are caused by a genetic abnormality. ‘We can run tests to find out,’ she said. An amniocentesis could check for a genetic condition, but it did carry a small risk of miscarriage.
‘No,’ I said. ‘If something is wrong, then we’ll deal with it when he’s here.’
Besides, it wasn’t going to change anything.
I’d love my little boy no matter what. The weeks crawled by… My mum, Madge, 54, was my rock as I fretted about the future. She helped me buy a cot, pushchair, car seat, clothes.
In June 2013, I went into labour.
It was a very rough 24 hours before Leo was finally born by Caesarean, weighing 8lb.
Gazing at my boy in his dad’s arms, I knew instantly that he was different.
He had a high forehead, wide-set eyes. But I didn’t care. The love I felt overpowered any fears I had.
‘He’s still beautiful,’ a nurse smiled at me.
Later, a genetic specialist told us that Leo had type 1 Pfeiffer syndrome.
He explained that it was this genetic disorder that had caused his craniosynostosis.
Bones in Leo’s skull were fused together, affecting the shape of his face and head.
His hands and feet were affected, too – he’d have short fingers and toes.
As I digested the news, I expected a wave of terror… For my heart to shatter.
But looking at my baby boy, I felt none of that.
‘I’m just so grateful he’s here,’ I smiled tearfully.
Three days later, we went home and I threw myself into mummy duties.
Feeding, bathing, nappies. When Leo was 3 weeks, we went for his first consultation.
‘He’ll need to have surgery,’ the specialist said.
The craniosynostosis was causing pressure on his brain.
To relieve it, surgeons would have to remove a section of bone, reshape his skull.
Frightening.
But, thankfully, there was some good news, too.
‘His Pfeiffer syndrome isn’t life-limiting,’ he reassured us.
With the right treatment,
I expected a wave of terror, for my heart to shatter…
Leo would be able to live a long, happy and healthy life.
I sobbed with relief.
He wasn’t going to die.
In the September, Leo, then 3 months, had his operation at Birmingham Children’s Hospital.
‘I love you,’ I whispered as he was taken into theatre. My stomach was in knots. Hours dragged by before the surgeon finally emerged.
‘Leo has suffered a seizure...’ he said, and my heart sank.
Luckily, it had just been a reaction to the pressure released during the surgery. He was OK! We went to see him. ‘But he looks so tiny,’ I wept.
A huge bandage was wrapped round his head, wires snaked from his little body.
For three weeks, I didn’t leave my boy’s side.
But he recovered well – and, by the time we went home, he was fighting fit.
I started taking Leo to a local playgroup.
Still, I was protective, kept him away from other babies.
Until one day, my mum came with me.
I nipped to the loo, returned to find Leo lying there with all the other babies.
I raced over to scoop him up, tell Mum off.
Only, I realised that Leo was smiling – playing – just like the rest of the littl’uns.
Realising I couldn’t wrap him in cotton wool, I decided to let him start playing with the other babies. He soon made friends – and so did I.
When Leo was 2 years old, me and his dad split up.
So focused on Leo, we’d grown apart and were better off as friends.
In September 2015, I decided to put Leo in a mainstream nursery, as I wanted him to have the same opportunities as other children.
He flourished there, made more friends.
Over the following years, Leo needed to have four more surgeries.
A lumbar puncture to release spinal fluid, and an operation to correct his right foot as it wasn’t developing properly. He also had his adenoids and tonsils out to avoid infection.
But he sailed through. Other than his appearance, he was just like any other little boy.
And in August last year, he started mainstream school. He thrived, was so popular. By this point, I’d met Pete, 38. He adores Leo, and h his two sons – Luke, 13, and I Isaac, 12 – are both wonderful stepbrothers. Patient and caring. Last October, Leo had to have more bone removed from his skull.
He doesn’t like needles, but loves seeing the nurses.
‘They’ll fix my head!’ he tells me, grinning.
When we’re out, people make comments about Leo’s unusual appearance – usually kids.
‘That boy’s got funny eyes!’ they say. But on second glance, they see that Leo has the biggest grin on his face.
And people can’t help but smile back at him!
Leo, now 5, was a smiley baby – now he’s a happy boy.
Luckily, he doesn’t notice the looks or comments.
And, while he knows he’s different, he never lets it get him down.
He confidently runs to join other kids in the park.
I’m still protective – but if people want to stare, they can.
All they’ll see is my lovely Leo’s magic smile…