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'We wouldn't risk having another child - Daisy’s diagnosis feels like PTSD'

Pilar Mitchell |


Nine-week-old Daisy, along with her mum and brother, are the only people in the world known to have this condition.

 

When nine-week-old baby Daisy Spittle was born - her parents thought they’d got lucky.

Unlike her older brother David who had heart surgery at three months old, Daisy seemed fighting fit.

“We were really hoping we’d dodged a bullet with Daisy,” mum Donna told Sunshine Coast Daily.

It really was all too good to be true…

Donna and her husband Aidan were blissfully unaware that Daisy was dangerously ill until her six-week vaccinations.

“The nurse at the clinic noticed enough warning signs to send her in an ambulance to the hospital,” Aidan wrote on the family’s GoFundMe page.

“Daisy had a battery of tests run on her and an appointment with the paediatric cardiologist [from Brisbane]. He diagnosed her with a ventricular septal defect (VSD). Surgery was scheduled for late August.”

“We really thought she was going to be okay, but it turns out her ventricular septal defect was worse than David’s.”

 

mum and babyIn one month Daisy will undergo open heart surgery that will save her life. Photo: John McCutcheon

 

A common condition - but a very rare cause

A ventricular septal defect is a hole in the heart, and it’s a common heart condition. But how it came about in the Spittle family is so rare, there are only three known cases in the word: Daisy, David and Donna.

“Basically it’s a gap between the chambers of the heart and it means when the heart is pumping it has to pump extra hard,” Donna said.

“Some of the blood that should go through is coming back.”

Both Donna and David had ventricular septal defect repair.

“VSD is fairly common but the thing that’s caused the heart defect in us is a connective tissue disorder,”  said Donna said.

“There are certain genes that if you have them and they’re defective can cause a connective tissue disorder but in myself, my son, and Daisy they’ve done genetic testing and they can’t find the gene that’s responsible.

“They believe we have started our own defect.”

 

baby with nose tubeDarling Daisy is so fragile right now that she can’t be moved. Photo: John McCutcheon

 

Daisy is at a very crucial stage right now

It’s crucial that Daisy gains weight before her surgery in August, but she’s having breathing difficulties and is so fatigued she can’t eat.

“She’s set up with a feeding tube which drips in a few milliliters at a time so her heart doesn’t get overwhelmed,” Donna said.

According to Aidan, Daisy’s formula is prescribed by a doctor and not covered by the pharmaceutical benefits scheme. She’s also on two types of diuretics to reduce fluid build-up around her lungs and heart.

All this means the precious baby can’t be moved.

“Her heart is working so hard it’s causing a lot of vomiting,” Donna said.

A scary case of déjà vu

For the Spittles, taking a young baby on a journey through open heart surgery and recovery is familiar. Their son David had the same surgery at three months.

Although it was successful, the condition haunts the boy, now five-years-old and in kindergarten. School days are hard to endure as David is so fatigued, and fine motor tasks like holding a pencil are very difficult for him.

 

b88845621z1_20170705162618_000g3emj9qa2-0-160a3t6li61fc4jyio2_fct1817x1363x60_ct620x465Donna and both of her children have the same condition that caused VSD. Photo: John McCutcheon

 

Financial worries compound emotional stress

Any future Spittle children have a 50/50 chance of having the same conditions, and for Donna and Aidan, those odds are too risky.

“There’s no way we’d risk having another,” Donna said.

“I think for my husband and I, [Daisy’s diagnosis] has almost been like having PTSD,” she said.

Daisy’s surgery will be covered by Medicare, but family expenses won’t, and the Spittles worry about expenses. David’s surgery and medications cost around $27,000.

“We really struggled financially last time,” Donna said. “Knowing what’s coming meant we needed to ask for help.”

“Complete strangers have reached out to support Daisy”

The family has started a GoFundMe page to ask for help from the community.

“My wife and I aren’t the sort to beg, but when it’s your children you’ll do whatever it takes,” wrote Aidan. “It takes a village to save our child and I would be honoured if you chose to be a part of our village.”

So far the campaign is going well, and any funds raised beyond their expenses will be donated to Ronald McDonald House, a charity that provides a home away from home for families of seriously ill children being treated at nearby hospitals.

To support the Spittles, visit their GoFundMe campaign.