The doting parents of a baby girl, who survived a stroke in the womb and surgery to remove her limbs – including two fingers which "fell off" as she was bathed – have said she still has the "biggest, brightest smile" despite her troubles.
Just four months old, Darcie-May Ferris has already 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.
The same clots also caused a stroke in the right side of her brain before she was even born, leaving her mom, accounts manager Amy Cawley, 27, and dad, prison officer Alex Ferris, 26, of Verwood, Dorset, England, fearing she would not survive the pregnancy.
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 realize 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 realize 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."
Darcie (PA Real Life/Collect)
Amy, who has another daughter from a previous relationship, Summer, eight, explained that her pregnancy was straightforward until, at 24 weeks, she realized she had not been feeling as much movement as she should.
She was monitored with extra scans at Poole Hospital, Dorset, which revealed that Darcie was small for her age, however medics did not seem especially worried at this stage.
Then, at 34 weeks, she became concerned when she had not felt her baby move for three days.
Darcie and her mom (PA Real Life/Collect)
Racing to the maternity unit at Poole Hospital, she had an ultrasound scan, which showed Darcie's heart rate was very low.
Amy recalled:
"They said they were going to deliver her then and there by caesarean section."
"I called Alex's work and he rushed over. By the time he got there I was in surgery."
Darcie (PA Real Life/Collect)
Amy added:
"They 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."
As soon as Darcie was born on 9 December last year, weighing 4lb 7oz, medics noticed that both her arms were discolored and covered in black birthmark-like lesions.
Before either of her parents could hold her, she was whisked to neonatal intensive care.
"The atmosphere in the room after she was delivered was very strange. They told us her arms didn't look normal."
Around seven hours later, the couple finally got to see their little girl.
Alex continued:
"She appeared to have these lesions on her arm, which at first we thought were birthmarks or a skin condition."
Darcie (PA Real Life/Collect)
He explained:
"I had been so excited about having a baby but when we got to see her, I couldn't believe it – her arms were purple and black."
"We were both scared. When we saw them we didn't know how to feel or have a clue what it was."
Next, Darcie was transferred to Southampton General Hospital, in Hampshire, where specialist staff were equipped to deal with burns and skin grafts.
Darcie (PA Real Life/Collect)
There, she underwent an MRI to see if there was an explanation as to what was causing her condition.
Shockingly, the scan showed she had suffered a stroke in the womb on the right side of her brain, caused by a blood clot in her shoulder that had traveled up.
Amy said:
"We don't know why it happened or whether it could happen again if Darcie has a baby sister or brother."
Darcie and her parents (PA Real Life/Collect)
"I had my placenta tested to see if it could be a genetic problem, but the tests did not come back with anything," continued Amy.
"Darcie was very heavily sedated for the first 10 days of her life, so she was not in pain, but she was in an incubator which made it really difficult because we couldn't hold her."
"We couldn't cuddle her until she was eight days old which was so hard. We wanted desperately to bond with her, but not being able to touch her made it more difficult."
In neonatal intensive care, Darcie was placed 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 color a couple of weeks after she was born – although it was too late for the fingers on her left hand.
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."
(PA Real Life/Collect)
"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," Alex recalled.
"Her fingers looked like little sultanas."
"Her first operation was to have those tidied up when she was six weeks old. 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."
Alex and Darcie (PA Real Life/Collect)
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 color. The skin had gone necrotic, which is where the tissue and cells start to die, and smelled really bad."
Amy and Darcie (PA Real Life/Collect)
Alex added:
"It was worse towards the hand and we'd have to keep dressing it."
Having spent Christmas and New Year in the hospital, Amy and Alex were delighted to finally bring Darcie home in January.
Back home, they continued to change her dressings every day, and returned to the 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, Darcie has just her thumb and index finger on her left hand, and her right arm has been amputated from the forearm.
Darcie (PA Real Life/Collect)
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 (~$6,250) from friends, family and strangers.
Darcie (PA Real Life/Collect)
Despite all she has faced, Darcie is a bright, bubbly baby who is adored by her parents and siblings.
Alex said:
"There are a lot of unknowns at the moment. We don't know how much movement she will have in her arms, or whether it will affect her ability to crawl."
"We also 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."
Darcie and her mom (PA Real Life/Collect)
Alex added:
"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."
"Her big sisters adore her, and are not fazed by her hands and arms at all. It's nice that she has them to look out for her, but I think with what she's gone through, she's going to have a really thick skin and be able to hold her own."
To donate, visit GoFundMe here
