A brave woman who who was not expected to live for more than 24 hours as a newborn is tragically now receiving end of life care in hospital.
Caitlin Shaw, now 20, was born with a severe heart condition and a 'bigger head' than normal, and was taken to Alder Hey hospital for emergency life-saving surgery at just three weeks old. She underwent a further operation at six-weeks old, which stabilised her heart for some time.
Despite being faced with many health complications, Caitlin is now aged 20 and has been an 'inspiration', but her heartbroken mum Samantha and step-dad Ian, originally from Denton, Manchester, are hoping to make their terminally ill daughter's dream come true and tick off her bucket list, as she is now receiving end of life care.
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Earlier this month the family received some devastating news, when they were told by doctors that Caitlin's heart valve disease had become severe and was inoperable. She was placed on palliative care and had agreed to a DNR [do not resuscitate]. Caitlin has spent her whole life needing around-the-clock care for her condition.
Samantha told the Liverpool Echo: "During my pregnancy everything was fine, we didn't know she'd be poorly, they just said she'd have a bigger head than normal but never mentioned problems with her heart and lungs, she's only got one working lung. She was born full-term as well.
"We didn't know until 24-hours after that she had a serious heart problem and she needed life-saving treatment when she was strong enough. It was quite traumatic at the time. They gave me a long list of what was wrong with her and I did ask why it wasn't picked up but they said they didn't think she would live past 24-hours."
From aged six, Caitlin's health deteriorated. At the age of 10, she was also diagnosed with severe Klippel-Feil Syndrome [an abnormal fusion of the bones in the neck], severe scoliosis kyphoscoliosis [an abnormal curvature of the spine] and a combination of health issues that "have never been seen before in our country". She has since needed around-the-clock care.
Recently, the family were told that Caitlin's aorta stenosis [heart valve disease] had been upgraded from moderate to severe and this time it was inoperable and she was placed under palliative care. Sam added: "It's horrible watching your daughter go through this.
"It's still so raw, it's heart-breaking seeing her agree to a DNR, she'd had high hopes of having an operation, she lives in constant pain it's horrible to see."
A fundraising page has since been raised to help Caitlin make special memories with her loved ones. They hope to take a cruise so she can experience another country. Also on Caitlin's bucket list is a spa day, spending a day with a horse and a trip on the London Eye.
The fundraising page has so far raised over £1,000 of its £5,000 target as it reads: "Caitlin is a very strong, brave young lady and an inspiration to others. She has a smile that lights up the room and an infectious laugh with a wicked sense of humour that everyone loves.
"She has and still remains to put up one almighty fight, and battles against all odds, baffling the medical team along the way. Now free of the medical team, that had been restricting what she could do for most of her life, she now would like to do some of the fun things she couldn't do.
"We are hoping as a family that we can achieve at least this one last wish with the help and support of others to complete some of her bucket list before her health deteriorates anymore and see her continuing to smile."
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