Bereaved couple’s unbearable agony after deaths of twin girls
A heartbroken mother has shared her devastating story of grief after losing both her twin daughters in a matter of months. Christie Bannon reports
TWINS Arya and Ayva Bebee passed away either side of Christmas and their mum, Zoe, has described the family’s fight and strength in the face of unimaginable adversity.
In their short lives the pair suffered multiple health issues, which began in the womb.
Zoe began experiencing back pain during her pregnancy and quickly realised “something wasn’t right”.
The 23-year-old discovered she was suffering with twin-to-twin syndrome, a rare condition where twins share a placenta.
Shortly after her 18-week scan, Miss Marsh underwent laser surgery in Birmingham in an attempt to separate her placenta, allowing each twin to develop independently.
“At my 18-week scan they saw that Arya had a bit more fluid around her than Ayva so on July 11 I went up to Birmingham to have surgery,” she said.
“I had a monochorionic pregnancy (a multiple pregnancy, most commonly a twin pregnancy, where babies are dependent on a single, shared placenta).
“They tried lasering the placenta into two because I just had one but my waters broke the next day so from 19 weeks to 26 weeks I was leaking my amniotic fluid.
“I went into labour at 26 weeks and they were born on September 3.”
Miss Marsh and her partner, David Bebee, aged 31, of Swansea, welcomed their twin daughters, Arya, who weighed 500 grams, and Ayva, who weighed 400 grams, at Singleton Hospital.
But just three days later Ayva passed away.
“Her kidneys were zero functioning,” the brave mum said.
“She was stunning and really feisty. She would have one eye open and always peek at you.
“We spent as much time with her as we could and did footprints with her and read to her.
“She kept getting more and more ill and she was swelling up because she was not getting rid of any fluid.”
Just days after tragically losing one of their twins, the couple were dealt more devastating news.
Arya, who was one week old, had to be transferred to the University Hospital of Wales, in Cardiff, as she was born with perforation of the bowel (a hole in the bowel).
“It was really, really hard to concentrate on Arya after losing Ayva,” Miss Marsh said.
“We felt like we were forgetting about Ayva and we could only have her funeral seven weeks later because we were back and forth from hospitals with Arya.
“She had spontaneous perforation of the bowel and she had to have surgery for that. Her surgery went well and she had a stoma put in and we went back to Swansea.
“She was fine for a month and was on my milk and formula.”
However, there was to be yet more bad news.
“We found out that she had necrotising enterocolitis (where tissues in the intestine become inflamed and start to die) so she was rushed back up to Cardiff for another two surgeries.
“She swelled up within half an hour.”
The first procedure that Arya underwent involved her stomach being cut open to “release the pressure and gases” that had built up inside her.
The second procedure, to remove the dead tissue, left her with just an eight-centimetre bowel.
Her mum added: “After the first surgery they didn’t close her back up in order to give her bowel a chance to rebuild itself.
“But in less than 24 hours they saw that was not happening so they operated again to remove the dead bowel.
“We found out that she had an eight-centimetre bowel and it was supposed to be 200 centimetres. “She couldn’t live off that.” Following the two procedures, Arya’s wound became infected and she also suffered an infection in her longline (which is used to feed babies) which became septic and left medical staff unable to give her morphine.
Just days after Christmas her parents had to make the difficult decision to move her to the Ty Hafan children’s hospice, near Penarth.
“The only other option was a cannula (a tube inserted into the body often to deliver or remove fluid) so they wouldn’t get infected,” Miss Marsh said.
“It got to the point where they could not give her morphine or medication.”
On their journey to Ty Hafan at the beginning of January, staff arranged a pit-stop so the family could take their daughter to the beach for the first and last time.
While in the hospice, Arya got to go swimming, out for a walk in the pram and even got to meet the family dog.
Miss Marsh said: “When we got to Ty Hafan my dog was there with my mum, so she got to meet Arya.
“I had a diary where I would write to Arya and I would write to her about the day.
“She was a big, big character and she was definitely cheeky. They both had so much strength for tiny humans.
“I bought Disney princess outfits for her from Build a Bear because she was so small. She made it to four and a half pounds.
“Since she had her infection she was nil by mouth so she was having midazolam for her hunger pain.
“I was watching my daughter losing weight. It was like a waiting game and I would always pray for one more day but then on that one more day she would be in more pain.
“Arya lasted two and a half weeks without oxygen before passing away on January 20.
“The stuff I’ve left there with is amazing; moulds of her hands and I had loads of professional photos taken of her.”
The heartbroken mum explained that while Arya was fighting for her life in hospital, the place they lived “never felt like home”.
“It is difficult to have that love and then going home and not being with them,” she said.
“Since coming home I have turned my house upside down because I don’t want to be here.
“It never felt like home when she was in hospital.
“The first time I slept in my bed after going into labour was five weeks later because we had been travelling to Bristol and Birmingham for consultants and specialists.
“I was living out of a bag.” Now the family are fundraising to give back to the neonatal intensive care unit (NICU) at the University Hospital of Wales, while some of the money raised will also be going towards Arya’s funeral.
Miss Marsh is hoping to raise £1,000 to be able to provide hampers for parents with children on the ward and new bedding.
She said: “It made a difference for me having nice bedding for her.
“A lot of the money is going to NICU but we are fundraising for the funeral too.
“At 23 you don’t think you’re going to be burying your daughters.
“The support has been amazing.”