At 34 weeks pregnant, Amy Cawley was concerned she hadn’t felt her baby move for three days.
The 27-year-old’s pregnancy had been monitored closely because she had been having reduced movement.
Scans showed that her baby girl was small for her age, however medics weren’t too worried.
But this time, when she went to Poole Hospital, Dorset, a scan showed that the bay’s heart rate was very low and they said they would have to deliver her by emergency c-section.
Her partner, prison officer Alex Ferris, 26, of Verwood, Dorset, arrived after she had been taken down for surgery.
Darcie-May Ferris was born on 9 December last year, weighing 4lb 7oz, but as soon as she arrived, medics noticed that both her arms were discoloured and covered in black birthmark-like lesions.
She was taken to neo-natal intensive care and then transferred to Southampton General Hospital, in Hampshire, where specialist staff were equipped to deal with burns and skin grafts.
Her parents weren’t able to hold her and an MRI scan showed that she had suffered a stroke in the womb, caused by a blood clot travelling from her shoulder.
Since then, Darcie has undergone six operations to gradually remove her hands and arms, which turned black and began to rot due to clots in her shoulders cutting off the blood supply.
One of the most shocking moments for her parents was when some of her fingers fell off while she was in the bath.
But despite her rocky start – which included spending the first six weeks of her life in hospital – Darcie’s future is looking bright, according to her parents, who are fundraising to help pay for her ongoing care.
Alex, who also has a four-year-old daughter from a previous relationship, said: ‘Darcie has gone through so much in her little life, and we realise every day how lucky we are that she’s here.
‘I know she will not know any different as she will grow up without her arms and hands, but she will realise she is different to other children and it will be up to us as her parents to help her feel comfortable and be proud of who she is.’
Amy, who has another daughter from a previous relationship, Summer, eight, explained that they are just happy that their daughter is alive.
She said: ‘Doctors told me afterwards if they had waited another 48 hours, Darcie wouldn’t have made it. It was so scary to think how close we’d come to losing her.’
‘We don’t know why it happened or whether it could happen again if Darcie has a baby sister or brother.
‘I had my placenta tested to see if it could be a genetic problem, but the tests did not come back with anything.’
After she was born, Darcie was given on medication to try and thin her blood and break up the clots in her shoulder.
At first, the treatment appeared to be working, and her left arm started to go back to its normal colour a couple of weeks after she was born – although it was too late for the fingers on her left hand, leading to them coming off in the bath.
Alex explained: ‘Her thumb and index finger on her left hand were okay, but she had three black fingers, and it became clear they were not going to last.
‘We had to let them fall off. In fact, we were bathing her one day and a couple of her fingers just fell off. We had been expecting it to happen, but it was horrible, and we didn’t really know how to deal with it.
‘Her fingers looked like little sultanas.’
Her first operation was to have those fingers tidied up when she was just six weeks old.
Alex said: ‘The skin had come away and left the bone, so the surgeon had to trim the bone back to allow the skin to heal over it.’
Then, the focus turned to Darcie’s right arm, which did not appear to be healing as well as the left.
‘It wasn’t clear what the best option would be – either to amputate or to play the waiting game and see if it healed itself, because a baby’s skin has a better ability to heal than an adult’s,’ Alex said.
‘The surgeons decided to leave it a bit longer, but it was awful because her skin was a greeny-grey colour. The skin had gone necrotic, which is where the tissue and cells start to die, and smelled really bad.
‘It was worse towards the hand and we’d have to keep dressing it.’
The couple were able to bring Darcie home for the first time in January but they continued to change her dressings every day, and returned to hospital for weekly appointments, where doctors monitored Darcie’s progress, and carried out gradual amputations on her right arm.
‘The worst thing was if she was going to have an amputation, she would have to fast from 2am the day before and she didn’t understand that, obviously,’ said Amy. ‘She just knew she was hungry and not getting fed.
‘We did that for four weeks, and they were gradually making her right arm shorter. The fingers on her right hand had been dead for so long that they fused into her palm, so it was like one big block of dead skin.’
Now, after a total of six operations in just four months, Darcie has just her thumb and index finger on her left hand, and her right arm has been amputated from the forearm.
She will require further operations on her right arm, until the deteriorated skin is all gone and only healthy tissue remains, and she will also need skin grafts in the future.
Alex said surgeons resisted removing her whole arm in one go, because they were hopeful that the skin would heal itself, and wanted to give her as much length as possible.
Then, her parents will focus on physiotherapy. To help with the costs of her ongoing care, they have set up a GoFundMe, which has raised almost £5,000 from friends, family and strangers.
Alex said: ‘We don’t know what the impact the stroke will have had until she starts to develop and to learn, so now we’re trying to fundraise via GoFundMe to help her lead as normal a life as possible.
‘We want to give her the option to have prosthetic limbs when she’s a bit older. The NHS prosthetics are very basic, but there are some amazing prosthetics out there which have grip and movement.
‘Darcie is the most amazing little girl with a beautiful smile. She’s developing a little personality now. She knows what she wants and behaves like a little diva.’
You can donate to her fundraising page online.
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