Seven-week-old William Cameron snuggles into his mum Nicole’s arms.
As he drifts off to sleep he reaches a tiny hand out in search of one of her fingers.
He finds it, grabs it, squeezes and holds tight.
“Moments like these melt my heart,” his mum, Te Awamutu’s Nicole Cameron, said.
“They’re what sustain us. We’re doing everything we can to have as many more of them with him as possible.”
That shared love – their son’s for them, evident in those moments, and theirs for him is one of the few constants Nicole and her husband Ryan cling to as they begin a medical journey “beyond their wildest imagination”.
“It’s turned our lives upside down.”
William, the couple’s first-born child, was born in lockdown at 37 weeks having been growth-restricted from 28 weeks.
Nicole grew up in Cambridge, Ryan moved to town from the United Kingdom two years ago. Last year, the family started 5 Stars Solu ions, a cleaning company which services the greater Waikato.
Call it a mother’s intuition, but since William’s birth, Nicole said she could sense something wasn’t quite right.
A string of discouraging doctors’ visits and hospital appointments culminated in one final desperate attempt – a visit to a Waikato Hospital paediatric consultant, who then had William transferred to Auckland’s Starship Hospital.
Upon arrival, the couple was stunned to learn he needed emergency open heart bypass surgery because he has supravalvular aortic stenosis – a heart condition which narrows the large blood vessel that carries blood from the heart to the rest of the body.
William also has pulmonary stenosis, which narrows the pulmonary valve opening and slows blood flow.
Doctors performed an eight-hour operation on Queen’s Birthday weekend Friday – calling it “95 percent” successful.
“We’re so grateful to the doctors and nurses – everyone involved – they’ve done an amazing job,” Nicole said.
But in Nicole’s own words that was, ironically, just the start.
They’ve now been told there’s a high probability William has a rare, lifethreatening condition – Williams Syndrome.
Baby William’s name and the condition doctors believe he has is a coincidence.
Only about 200 New Zealanders have it – it’s a genetic condition present at birth characterised by medical problems including cardiovascular disease, developmental delays, and learning disabilities.
If William does have it, he’ll need constant medical attention – multiple surgeries and hospital care – for the rest of his life.
There is now no guarantee how long that will be.
“We got the shock of our lives – doctors are 99 percent sure, and it’s rocked us to our core.
“Never in a million years did we dream this. I’ve never been through so many emotions as I have while we process what this means.”
William could be home from his initial surgery by next week – but the family initially faces two years of unknowns.
It will be that long before, doctors hope, William’s heart is big enough for them to operate on another area of it – but during that time he’s highly susceptible to a heart attack or stroke.
“We have no choice but to be optimistic – we just have to take life moment by moment, like those hugs,” Nicole said of their day-today approach.
“Firstly, we want William to grow big enough to lift and support his own neck and then, of course, to see him crawl and say his first word.
“The truth is though, we don’t know how long we have with our baby.”
And, even when they do go home, the couple face the task of paying for William’s ongoing at home care and the associated equipment that requires.
Candidly, Nicole said parents on a similar journey to William’s are never far from her mind.
“Please, trust that inner voice – if you feel like there is something going on for one of your children – please do get it checked – and don’t be afraid to keep going back.”
As an effort to help going forward, wider family members have set up a GiveaLittle page called Please Help Baby William.
Just over $5000 has been gifted.
Readers will find the page at Givealittle.co.nz