Rare condition affects twin

16:00, Mar 19 2014
Nong Wilson
AWAITING DIAGNOSIS: Kayla with her twin boys, Axel, left, and Kyan.

The future is uncertain for 3-year-old Axel.

He was born just two minutes behind his identical twin brother Kyan but he has faced a series of daunting hurdles right from the start.

His mother Kayla Crossley-Coe was a 16-year-old high school student receiving medical care for pneumonia when she found she was five months pregnant - with twins.

Scans and tests showed that the smaller of the foetuses had just a 2 to 5 per cent chance of surviving outside her womb.

She was asked if she wanted to cut the umbilical chord to the smaller twin to give the bigger one a better chance of survival.

But Kayla said no and the boys were born by Caesarian section on December 6.


Kyan measured 31cm and weighed 1.492kg.

His little brother weighed in at 560gm and measured a tiny 19cm.

"I could hold him in the palm of one hand," Kayla says.

She spent five months in hospital with the boys, two months at Middlemore and three months in Whangarei.

Kyan now weighs 15.3kg, Axel just 10.7kg.

Axel has had a number of operations for problems on internal organs and has trouble absorbing nutrients.

He gained a mere 500g body weight in the past year.

"We're in the middle of getting a diagnosis but we have been told by several people in the medical profession that it's likely to be the rare growth disorder called Russell-Silver Syndrome.

"This is all very new. I've known about it for just two weeks," she says.

"We've seen three GPs, a surgeon, dietician and neuro development nurse and we are still waiting to see an endocrynologist."

Russell-Silver Syndrome is a genetic condition that affects one in 100,000 children.

Axel will soon undergo a complete range of genetic tests.

Kayla is in touch with an Auckland family also touched by the rare disorder.

The Dale family of Hamilton has twin boys in a similar situation and is raising money through Givealittle.co.nz to attend a Major Aspects of Growth in Children conference in the United States in July.

Kayla is keeping an eye on their story while she has her hands full as a fulltime mother.

She hopes to share information they pick up about the condition during the conference.

Kayla has a dream of topping up her NCEA units to continue her studies and, once the boys are in school, she is looking at entering the field of business or event management.

"But at this stage I just don't know," she says.