A mum hopes to raise awareness of a rare birth defect after her baby girl was diagnosed with a condition leaving her unable to swallow.
Chloe Stewart’s daughter Annarose, who is now six months old, was born without the ability to swallow due to a rare congenital condition – esophageal atresia and tracheo-oesophageal fistula (TOF).
After Chloe’s C-section, her husband Andrew cuddled into his daughter for the first time and it was then doctors noticed Annarose looked like she was holding her breath.
Chloe, 23, said: “They put a tube down her throat to clear stuff out of her tummy and the tube wouldn’t go down much further, so they decided to investigate.”
Babies born with TOF need to have intensive neo-natal care prior to corrective surgery, normally within days of birth.
Annarose had her first of four major operations on the day she was born.
Her mum Chloe said: “When my daughter was born, doctors found out her oesophagus was not connected to her stomach, but her oesophagus was connected to her trachea (windpipe).
“They had to do the operation to connect her stomach to her food pipe and disconnect the windpipe from the food pipe.”
At the moment, Annarose needs to undergo a procedure, known as dilation, on her throat every three weeks to make it wide enough for her to be able to eat and drink.
Chloe said: “She’s been fed by tube since she was born.
“She’s had four major operations and she still has a few dilations to go.”
The condition only affects one in every 3,500 babies annually in the UK.
Due to her condition, Annarose had to spend 47 days in The Royal Aberdeen Children’s Hospital’s (RACH) NeoNatal Unit.
Chloe said: “She used to have really thick saliva and it used to choke her, so we had to suck out the saliva for her to be able to breathe.
“We saw her go blue a few times.
“She also had an operation to move her stomach down so she doesn’t have any reflux and she has a conventional PEG in her tummy so she can be fed that way as well.”
Annarose was also born without a rectum and currently has a stoma bag.
Chloe, who works as a hairdresser and lives in Mastrick with her husband Andrew, said her daughter’s next major operation will see Annarose have a fully functioning back passage, meaning she will no longer need to use a stoma bag.
Chloe added: “They tried to do a keyhole (surgery) for her stomach, but they had to cut her open, so now she has a scar on her tummy and a scar underneath her arm too.
“She still needs a few more dilations – the operation will be in a few months’ time.”
Annarose should get dilation treatment at the hospital every three weeks, although appointments have been postponed due to the ongoing coronavirus pandemic.
The coronavirus crisis also meant that when Annarose was born, Chloe’s husband was not able to be in the same room with them.
Chloe said: “It was so heartbreaking because we couldn’t be together as a family.
“My husband cannot even see her when she’s in the hospital now – it can only be me.
“I just have to wait to receive a letter to find out when the next dilation appointment is, so we may only get a couple days’ notice because of Covid.”
Chloe praised RACH surgeons and nurses, calling neonatal surgeon Dr Yatin Patel “phenomenal”.
She said: “I couldn’t ever trust anybody the way I trust him.
“He’s the best surgeon I could have ever asked for.
“I would like to say a massive thanks to Aberdeen Maternity Hospital, RACH and the Neonatal unit because without any of them we honestly wouldn’t be where we are now.
“Annarose has a full team at the hospital – everyone from dieticians and gastro team, to nurses are so lovely.
“They are a second family to us – they are so great.”
Annarose is now permanently home, but Chloe said she is in and out of the hospital.
“She was in the hospital for five days because she is very small,” said Chloe.
“For a six-month-old, she only weighs 9lb 6oz and they needed her to put on weight, but she’s now home again.”
Since Chloe hasn’t heard of the condition before her child was diagnosed, she would like to raise awareness of the birth defect.
Chloe said: “There’s a charity called TOFS and it was incredible to read how many people have the condition and I haven’t even heard of it.
“Their slogan is ‘supporting those unable to swallow’ and they really have been unbelievably brilliant.”
Chloe said that just being able to talk to other parents and seeing what they’re going through has been incredibly helpful.
“I haven’t found anyone with a child with this condition in Aberdeen,” said Chloe.
“Nobody knows what it is – people usually assume it’s a heart condition.”
Once restrictions allow, Chloe would like to organise a big fundraising event with the help of her local church to raise funds for The Archie Foundation, an Aberdeen charity offering extra support to sick children in hospitals.
Money will also be donated to the Friends of the Neonatal Unit charity that supports babies born sick or too soon and who are in special care in the neonatal unit.
Despite everything that she’s already been through, Chloe says Annarose is “such a happy girl”.
“She smiles at everything and is very cheery,” said Chloe.
“I have good days and bad days.
“There are obviously days when it’s really tough – it’s hard to see your child go through what she’s going through – but then there are also days when she’s so happy and smiley.”
Chloe finds her strength in knowing that while she’ll remember the pain her only child had to go through when she was very little, Annarose won’t remember any of it.
“This kind of puts me at ease – that she won’t have any memory of the pain,” she said.