You can’t steal my boy’s smile
Nothing can break my son’s smile
Picking baby names is such an exciting part of being pregnant. And, with our third on the way, me and my husband Jerry quickly settled on some favourites. ‘Victor or Amando for a boy,’ I said, stroking my bump. You see, Victor means conqueror – victorious. So I was thrilled when, at our 18-week ultrasound in August 2013, the doctor said we were having a little lad. We already had Mary, then 12, and Sofia, 2, and Jerry, now 39, wanted someone to kick a ball about with I’m sure! But the doctor went quiet. ‘There’s something odd about his cerebellum,’ she explained.
Sorry..?
One side of the brain looked larger than the other, but they couldn’t tell what was wrong. ‘He’ll most likely grow out of it,’ the doctor said. But, at 25 weeks, another scan revealed that I had too much amniotic fluid. As a nurse myself, I knew it could indicate a birth defect, most likely neurological. Then the 32-week scan showed my lad had sandal-gap deformity, where there’s a large space between the big toes and the others, likened to the gap caused by wearing sandals. ‘Will our boy be OK?’ I asked. Nobody could say, though. But, days later, when I awoke, my hands, face and feet were puffy. I also had the most excruciating headaches. ‘You have pre-eclampsia,’ my doctor told me. My blood pressure was really high. ‘What about my baby?’ I fretted. It can affect the blood flow to the placenta and cause clotting. Monitored closely, at 37 weeks and 1 day, my blood pressure was so high I had to be induced. I had an emergency Caesarean… Held my breath… Then, I heard a baby boy’s wail! ‘Victor!’ Jerry and
I cried at the same time! The name just felt right. ‘Victor the Conqueror – remember..? Whatever happens, he’ll battle it with a smile,’ Jerry said.
Our little Victor came out bright pink and screaming.
But, as he was placed in my arms, I noticed that his right cheek was bigger than his left.
That’s odd.
But we were allowed home after a couple of days.
Everything was fine at first, but at 3 weeks old, Victor began to vomit.
A scan showed he had pyloric stenosis – a narrowing of the passage between the stomach and the small bowel.
When Victor was two months old, a scan showed the right side of his brain was larger than the left and his brain had grooves of various sizes.
‘Victor has CLOVES,’ the doctor said. It stands for congenital, lipomatous, overgrowth, vascular malformations, epidermal nevi and spinal/skeletal anomalies and/or scoliosis. It’s an overgrowth illness that causes tumours to form.’
In Victor’s case, it was causing his right cheek to swell with a fatty growth.
He was one of only 200 people worldwide to be diagnosed with the condition. There was more… At five months old, Victor started having seizures.
His eyes would shake, his body would stiffen and go blue, and he’d stop breathing.
Although we tried to make life as normal as possible for our other children, it was hard knowing that a bad seizure would make Victor so poorly.
Our boy was given medication to try to control the seizures.
Desperate to know more about what our son’s future held, we joined support groups. Met other CLOVES families.
Some with the condition live long lives, but others die young due to brain malformations, pneumonia and blood clots. But our battler fought on. At 12 months old, Victor started eating solid food. Pizzas are his favourite! He started talking, too. Then walking…
Nothing holds him back. Even when, at 2 years old, Victor to have his spinal cord fixed – it had to be tethered and pulled tight like an elastic band.
Soon after, he was back on his feet, grinning away.
His older sisters always look out for him.
His large feet and damaged cerebellum mean he can be unbalanced and tumble over. But, undeterred, he just gets back up and carries on.
Unfazed, he’s so bright. Knows his colours, can count to 12 and sing the alphabet. We’re so proud of him. Now 3, Victor has started pre-school and has made lots of friends.
They can see past Victor’s facial abnormality.
He loves it so much he gets angry when I come to pick him up – he doesn’t want to leave!
Victor doesn’t even see himself as different.
And we refuse to wrap him up in cotton wool.
Every day, Victor wakes up and looks in the mirror.
‘Handsome!’ he points at his reflection – as I agree, naturally.
In May, he had surgery on his right cheek to remove the fatty tissue. Doctors say it could grow back, but they’re hopeful that it won’t.
His teeth are bigger on that side, so they’re next to be sorted. Then his chubby lips.
Unfortunately, there’s currently no cure for CLOVES.
All doctors can do is manage Victor and try to deal with the implications caused by overgrowth.
His latest test results show no signs of rapid change. Hopefully it’ll stay that way. But whatever happens, we know that our Victor the Conqueror will beat it with a smile!
He tumbles over – but just gets straight back up!