Our miracle baby girl died in my arms after doctors disagreed with us – we don't want other parents to face our agony
Cassidy and Klaire have been told they may have to wait up to 18 months to get answers on their little girl's death
TRAGIC LOSS Our miracle baby girl died in my arms after doctors disagreed with us – we don't want other parents to face our agony
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A COUPLE have shared how their miracle baby tragically died after she was sent home from hospital despite their objections.
Klaire Carroll, 37, and Cassidy O'Connell, 26, worked overtime for years to afford IVF.
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Harlow Maeve Carroll-O'Connell was born in January this year
Credit: Jam Press
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Cassidy, left, and Klaire, right, holding Harlow
Credit: Jam Press/Natalie Schott Photography
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The parents were devastated when their miracle baby passed away before she was even six months old
Credit: Jam Press/Klaire Carroll and Cassidy O�Connell
They were over the moon when they found out their efforts had paid off and were expecting a baby girl.
But the parents' joy was soon dimmed when a 20-week scan revealed their tot had a congenital heart defect, tethered spine and bowel condition.
Klaire and Cassidy were given the option of ending the pregnancy, palliative care or multiple surgeries – they chose the third one.
Cassidy gave birth to Harlow Maeve Carroll-O'Connell on January 30 this year via C-section with Klaire by her side, at St Michael's Hospital in Bristol.
The tot spent the next few months in and out of hospital due to breathing difficulties, poor feeding and weight gain issues.
Cassidy, from Stroud in Gloucestershire, said: 'Harlow was treated for sepsis, meningitis, everything – but her infection markers were still high.
'They [the doctors] ran every test they could and couldn't find the cause.
'They decided to discharge her and we argued with the consultant – we knew something was wrong and she needed to stay in hospital.
'We are sharing our story to help other parents and encourage them to always advocate for their kids if they gut says something is amiss.'
In May, little Harlow's oxygen levels dropped significantly and tests revealed she had a life-threatening bacterial infection affecting her heart.
Mum shares heartbreaking photo of baby boy fighting for life as a warning - after she found him coughing and drooling
She passed away on May 22, in her parents' arms.
A post mortem wasn't able to ascertain Harlow's cause of death.
The couple have reportedly been told they may have to wait up to 18 months to get a detailed report.
A GoFundMe page has since been set up to help the parents with funeral and memorial costs – which has already reached £3,000 of its £3,500 goal.
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The tot was diagnosed with congenital heart disease before she was born and was in and out of hospital
Credit: Jam Press/Klaire Carroll and Cassidy O�Connell
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The tot underwent open heart surgery but suddenly collapsed barely a month later
Credit: Jam Press
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Klaire and Cassidy may have to wait 18 months to get answers on what happened
Credit: Jam Press/Natalie Schott Photography
'We honestly cant believe how much support we have received from everyone,' Cassidy said.
'It's helped us immensely with being able to fund the send off our girl deserves.
'What we are going through is unimaginable, no one deserves to lose a child – but the love we are receiving is helping us to get through each day.
Little Harlow spent the first few weeks of her life in hospital.
She came home briefly, only to be rushed back in several times due to breathing difficulties, poor feeding and weight gain issues.
She underwent open-heart surgery – a BT shunt procedure that lasted around seven hours - on 31 March, with the aim of improving blood flow to her lungs.
Congenital heart disease is a general term for a range of birth defects that affect the normal way the heart works.
The term "congenital" means the condition is present from birth.
Congenital heart disease is one of the most common types of birth defect, affecting almost one in 100 babies born in the UK.
In most cases, no obvious cause of congenital heart disease is identified.
However, some things are known to increase the risk of the condition, including: Down's syndrome – a genetic disorder that affects a baby's normal physical development and causes learning difficulties
The mother having certain infections, such as rubella, during pregnancy
The mother taking certain types of medicine during pregnancy, including statins and some acne medicines
The mother smoking or drinking alcohol during pregnancy
The mother having poorly controlled type 1 diabetes or type 2 diabetes
other chromosome defects, where genes may be altered from normal and can be inherited
Congenital heart disease can have a number of symptoms, particularly in babies and children, including: Rapid heartbeat
Rapid breathing
Swelling of the legs, tummy or around the eyes
Extreme tiredness and fatigue
A blue tinge to the skin or lips
tiredness and rapid breathing when a baby is feeding
These problems are sometimes noticeable soon after birth, although mild defects may not cause any problems until later in life.
Klaire said: 'Harlow almost didn't make it through surgery.
'She fought and we just sat by her side, talking to her constantly and praying she would make it through.
'Things seemed to be heading in the right direction.
'They slowly lowered her sedation and she started moving her hands and feet, while trying to open her eyes.
'It was incredible – it was the best thing ever because we honestly thought we were going to lose her.
'So to see her wiggling her little toes – we were in floods of tears.'
Harlow was a cheeky and happy girl. We're really proud of the strength and resilience she showed during her short life
Claire
After surviving her surgery, Harlow was once again sent home with her family on 28 April.
Klaire and Cassidy, who build electronics for work, tried to create some normal memories as a family.
Cassidy said: 'At this point, she had spent more than three-quarters of her life in hospital.
'We wanted to try and be a normal family.
'We took her to the aquarium with our families and she absolutely loved it.
'Watching her look around and take everything in was just so lovely.
'It's one of our favourite, treasured memories.'
Devastating loss
By early May, Harlow's oxygen levels had dropped significantly.
She was blue-lighted to hospital where doctors found a shadow near her heart – it was endocarditis, a life-threatening bacterial infection of the heart's inner lining.
Medics had trouble inserting cannulas to give Harlow the antibiotics she needed and the tiny tot developed blood clots in her arm.
On 22 May, she was taken into surgery again to fit a new PICC line, a tube used to deliver medications and other treatments to veins near the heart.
According to her parents, Harlow was screaming and her skin colour was abnormal.
Klaire said: 'She went into cardiac arrest and died in my arms.
'They did CPR to try and bring her back but there was nothing they could do.
'Cass just spent the whole time screaming, 'I can't lose my baby.''
Living in an empty home filled with Harlow's things, the couple say the pain is like nothing they've ever known.
Klaire said: 'Harlow was a cheeky and happy girl.
'We're really proud of the strength and resilience she showed during her short life.
'She was a real fighter and left a lasting impression on everyone she met.'
'She had been through such a tough journey but every single step of the way that girl just fought through everything with a smile on her face whenever she could."
Jam Press approached University Hospital Bristol & Weston NHS Foundation Trust for comment.
Dr Rebecca Maxwell, chief medical officer at University Hospitals Bristol and Weston NHS Foundation Trust said: 'Our heartfelt condolences go out to Harlow's family during this difficult time.
'We remain in close contact with the family to address their concerns and provide ongoing support."
You can donate to Klaire and Cassidy's GoFundMe page here.
Any leftover funds will be donated to The Grand Appeal and Heart Heroes, charities that supported the parents through their journey.
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