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Mum shares guilt at passing on a genetic disorder to her two children.

Whenever Donna Spittles watches her young boy struggling with exhaustion and unable to join in playing with his friends she always feels guilty.

The five-year-old has inherited her medical condition which causes muscle problems and damage to the heart, reports Daily Mail. 

Doctors only discovered Donna’s disorder was genetic after her son needed a heart operation when he was just a few months old – identical to the one she had needed as a child.

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However Donna, 37, and her husband Aiden, 35, felt that their family was not yet complete and longed for a sibling for David.

Having been told there was a 50:50 chance of their child having the condition, they faced the agonising dilemma… should they give up their dream of expanding their family or risk bringing another child with a devastating disease into this world?

Now that her 10-week-old baby Daisy is fighting for her life in hospital, Donna, from Queensland, Australia, said there are times she now regrets taking that chance.

Just like her mother and brother, Daisy was born with a hole in the heart, known as ventricular septal defect (VSD).

While this a common defect, the cause of it is not – their genetic connective tissue disorder.

Mrs Spittles exclusively told MailOnline: ‘Daisy is being fed by a machine pumping formula into her nasal tube and we can’t even pick her up,’ she said. ‘It’s heartbreaking.’

‘It’s a waiting game now to see if she will put on weight and be strong enough for surgery.

‘I had five years of guilt with David for passing on this condition to him and now with Daisy it’s double fold.’

Daisy’s deterioration

Little Daisy was born a fighter – she came into the world with the cord wrapped three times around her neck and tore it off, her parents explain.

Now, she’ll soon be facing her biggest battle – open surgery to repair her tiny heart.

daisyVia Gofundme

The congenial defect has left her heart pumping so hard she is fighting for every breath.

With her unable to feed and her weight plummeting, doctors are not sure if she will be strong enough for the surgery she urgently needs to stay alive.

‘Daisy seemed fine when she was born and we thought we’d been lucky,’ explains Mrs Spittles.

But three weeks ago she started showing the same worrying symptoms David had and she was rushed to hospital.

Her feeding tube drips in a few millimetres at a time so her heart doesn’t get overwhelmed.

‘This means she can’t be moved… her heart is working so hard it’s causing her to vomit a lot,’ said Mrs Spittles.

‘We really thought she was going to be okay but it turns out her condition is worse than David’s was.’

‘We started our own defect’   

Mrs Spittles herself had heart surgery at five months old to close a hole in the heart but only had genetic testing when David was born.

‘They told us they can’t find the gene that’s responsible for this,’ she said.

‘So they believe that we have started our own defect.’ said Donna, We are the only people in the world with this disorder.

And while David pulled through surgery, the condition has left the boy, who is in his first year at school, struggling with fatigue and tasks like holding a pencil.

‘He can’t do things that normal kids do, like play football with his friends.

‘His muscles are too weak and he needs to rest a lot as he gets so exhausted.

‘We’ve been told he shouldn’t do anything too strenuous.’

Mrs Spittle says she herself was forced to give up on her dreams of working in the police force because of her disease, and she hopes for a better life for her children.

‘It’s so difficult because, as it’s so rare, doctors are baffled and can’t say what our future holds.’

The family have set up a GoFundMe page for anyone that can help with their financial burden.

Childhood heart disease is the biggest killer of Australian kids under one.

FACTS ABOUT CHD via Heartkids Au

  • Childhood heart disease is the biggest killer of Australian kids under one
  • Every day in Australia eight babies are born with a heart defect. That’s almost 3,000 each year.
  • Every week, four precious lives are lost.
  • There is no known cure or prevention. Once a Heartkid, always a Heartkid.
  • It’s estimated that 32,000 children (under 18 years of age) are currently living with CHD in Australia

Late night TV host, Jimmy Kimmel, recently shared his heartbreaking news after learning his newborn son had a congenital heart defect – Read more on that HERE.

As a mum myself of a child who suffers a congenital heart disease I feel terrible for this family and wish them all the best – You can read my story here

Share your comments below

Image via Daily Mail

  • wow they do have a long and tough road ahead of them but hopefully they will find the strength to carry on. I hope that there is a break through in research that will be able to help them in time. Sending prayers their way

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  • A difficult road for the family, but the bond between these siblings will be unique as they understand what the other is going through.

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  • Such a hard and cruel decision they had to make, and an incredibly heartbreaking battle they now face – sending prayers and good wishes their way!

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  • Hopefully Daisy will soon be strong enough to handle the surgery.
    I hope she and David won’t need extra surgery procedures as each time they touch the heart it bruises it. David may have to go to school less hours than normal if it continues to impacts on his health too much. A lass I went to high school had a heart problem which she had surgery for at a young age. When we went to physical activities she used to go to the library. She loved helping the librarian record the details of books being lent and returned. She was an avid reader too. The situation was explained to us by our teacher. As pupils we watched out for her without making it obvious. She may have been aware of it but never said anything. Adjusting from primary school to high school was harder for her because of having to go to different classrooms for some subjects. Occasionally she would get too fatigued and miss school for a couple of days.

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  • Tough for any family going through this medical journey.

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  • She knew the risk when she got pregnant with her second.

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  • Such a hard decision to make, whether to have children in these circumstances or not. Best wishes to them.

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  • Hopefully Daisy is able to have the surgery she so needs. Praying for Daisy and her family.

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  • What a hard battle. Best wishes for Daisy and the family!

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  • Aw bless, this must be heavy on this family !
    Hope and pray Daisy gets stronger and the operation will be successful.
    My youngest has a congenital heart disease as well.

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  • oh that is sad :( _ good luck to Daisy with her surgery – hope everything goes well for them all

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  • Wish Daisy all the best – and the rest of the family as well.

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  • Wishing little Daisy all the best with the surgery.

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  • What a rare and dangerous conditions! That little Daisy has such beautiful big eyes. Let’s hope the operation will succeed.

    Reply

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