Francis Erica Falla-Byers was born eight weeks early on 17 December weighing just 3.5 lb, and has already undergone one major surgery with others planned for the future.
She needs to stay in hospital in Brighton for at least the next few months and her parents say they have received ‘phenomenal’ support, including from charities Friends of SCBU and Jersey Children’s Charity.
Within minutes of her birth doctors discovered that Francis was suffering from the rare congenital anomalies Tracheo-Oesophageal Fistula and Oesophageal Atresia where the oesophagus ends in a blind upper pouch and is not connected to the stomach, meaning there is an abnormal connection between the trachea and oesophagus.
She was rushed to the Trevor Mann Baby Unit in Brighton with her father Stephen (34). Her mother Jo (39) was unable to fly immediately as she had just given birth.
Ms Falla-Byers, commercial, retail and enterprise manager at Highlands College, arrived in the UK the following day and has been by her daughter’s side ever since, while Mr Falla-Byers, an advertising executive at the JEP, recently had to return to Jersey to work. He now travels back to Brighton every weekend.
‘Obviously it was a massive shock,’ said Mr Falla-Byers. ‘We thought everything was fine and then you get told your baby is ill. It was a massive amount of shock and I just felt I had to be strong for my wife.
‘I now feel more sorry for my wife than anything else, she’s missing out on that one-to-one time with Francis as there are always two nurses nearby.’
Francis has what is known as a ‘long gap’ which is around 3 cm. As a result the first operation aimed at closing it did not work. A second procedure is due to take place next month to see if surgery will be able to connect the stomach to the oesophagus. If not then doctors will perform a total gastric transposition – sometimes referred to as a ‘stomach pull-up’ – where the oesophagus is replaced with the stomach.
Her parents have 24-hour access to their daughter’s bedside and Ms Falla-Byers said they are trying to keep life as normal as possible.
‘What she has is very complex and rare and it is a long road but she’s otherwise quite healthy and we are trying to look at the positives,’ she said.
‘She is a joy. She plays as much as a premature baby can and we are trying to do as much as we can as normal, so we have been able to turn her room into a little nursery.
‘The staff here make it as close as possible to home.’
She added: ‘We just want to thank all of those who have supported us.’
No one knows what causes TOF and OA but the long-term outlook for children with the conditions is positive.
However, Mr Falla-Byers said the past few months have taken their toll on the family.
He added: ‘It will be an ongoing issue and these children tend to have other associated symptoms, but, touch wood, she’s not showing any other problems yet. We just don’t know anything more until March. It is a bit of a waiting game and we can’t really make any plans.’
He added: ‘I’d like to be there every day with them. The other day it was her first bath and I missed it. I have got a picture but it isn’t the same. I’d like to be there to support my wife, too – she is under a lot of stress at the moment.’
Mr Falla-Byers thanked those who had provided ‘phenomenal’ support over the past few months, including local charities Friends of SCBU, Jersey Children’s Charity and Little Miracles, who give all parents with children in SCBU a memory gift box on their first day there. They also thanked the Ronald McDonald House in Brighton where they are staying, Brighton charity Rockinghorse Children’s Charity, which provided a hamper for them at Christmas, and the Royal Alexander Children’s Hospital where Francis is now being looked after and family and friends generally.
To donate visit jerseychildren.co.uk and click ‘donate’.
