A Scots woman was told in her 16th week of pregnancy that her baby would have ‘no quality of life’, only to see her baby now thriving.
The 31-year-old mother of three from Fife, was informed by medical professionals that her son would be born with hydrocephalus, meaning he would have weak muscles and bones, and would never be able to drink from a milk bottle – if he even reached birth.
At 22 weeks, Louise met with the neurologist team in Royal Infirmary Edinburgh, and were told that there was hope for her baby. At 31 weeks on 22nd June, baby Bailey Smith was welcomed to the world with a less severe version of the condition.
However, a mere 10 days later Bailey needed to have a surgical operation at the Edinburgh Royal Infirmary wherein specialist surgeons placed a thin tubal shunt into Bailey’s head to help drain the excess cerebrospinal fluid.
Following the operation, he was then taken to the Ronald McDonald House Charities, where he lived for 4 weeks with Mum Louise and was well-cared for by the staff.
Bailey is now doing well at home and has improved vastly since his operation but will face many challenges as he grows up. However, he will always have the strong support of his family, who now aim to help other families in need who are struggling with the cost of living crisis.
In an online post Louise shared she said: “I was 16 weeks pregnant when I found out my beautiful little boy had Hydrocephalus. We were told he’d have no quality of life, be extremely poorly, never be able to take a bottle of milk – and this was even if he survived childbirth.
“By 22 weeks pregnant, we met our lovely neuro team at the sick kids in Edinburgh, they gave us more hope and better outcomes to his condition and we kept fighting for our boy!
“But his head size and ventricles kept creeping up and I had to have weekly scans to monitor myself and little Bailey. I reached 31 weeks and had a planned C-section in a week’s time at the Royal Infirmary in Edinburgh.
“Bailey came out crying and wasn’t as poorly as we were told but his journey would always be a tough one. Due to Bailey being in the Neonatal unit and having brain surgery at 10 days old and us living over an hour away we were lucky enough to be given a room at the Ronald McDonald House in the Sick Kids [ward].
“The staff were lovely and always asked how Bailey was. The charity had rooms to sit in, so you can take a minute or [use] a play room for the children.
“They knew families would suddenly arrive without toiletries or food and there were items sitting for any family needing help. We were living there for 4 weeks before we were allowed to go home with our little boy, who is thriving!
“And if it wasn’t for the Ronald McDonald House Charity giving us a room just 5 minutes away from Bailey, we would have been travelling back and forth everyday from Fife and that’s why I’d like to give back.
“They have posted on Facebook that they are in desperate need of any toiletries that people can donate. I know how families feel being stuck in a hospital with nothing with them and the cost of living now, it’s financially difficult to continually buy items.
“If anyone can help with any sort of toiletries that I can take along to them when we go to Bailey’s appointment on the 27th of October, I’d forever be grateful.”
The viral post received 137 likes and reactions, 69 comments and 19 shares, with many readers sympathetic to the cause or sharing their positive experiences with the charity.
Shona Ritson commented: “What a gorgeous wee boy Bailey is. Wishing him many healthy and happy years.”
Lesley Brown said: “He is gorgeous, congratulations to you both!”
Morag Doctor commented: “My son and his wife and wee baby Charlotte have been staying in Ronald Mcdonald House in Glasgow. Their lovely wee girl was born with Apert Syndrome.
“What a shock as this was very unexpected. She was taken to Glasgow as soon as she was born. They have another wee boy, aged 3, who has special needs so they all had to go.
“She has been there for 2 weeks since then and was rushed from home in Fife and had another 10 hour surgery at 7 weeks old. Again they all went and stayed in Ronald Mcdonald’s House Charity and what a wonderful place.
“The staff are all lovely. It’s hard living away from home, running in affects 2 homes financially as well. Charlotte is home after 4 weeks but will have to have more surgery soon, bless her.
“Thank you Ronald Mcdonald house for the wonderful job you do.”
Bailey is now home with mum and siblings, and is enjoy life each day as it comes.
Speaking today, Louise said: “Baileys doing wonderful, he’s been thriving since being home from the hospital – he had an ultrasound at his local hospital and his brain is looking better than before, so his shunt is working well.
“Bailey loves a cuddle and will certainly give you lots of smiles. We don’t know what the future holds but it’s Bailey’s journey.”
The Ronald McDonald Charity House was founded in 1990 and has supported more than 50,000 families since. The charity provides a free ‘home away from home’ accommodation for families so they can be moments away from their child in hospital.
Ronald McDonald House Manager Ross King said: “It was our pleasure to accommodate and support Louise and family when baby Bailey was receiving treatment in hospital.
“We’re so pleased to hear that Bailey recovered well from surgery and that he is now thriving. Louise’s kind gesture of donating toiletries to the House is really appreciated.
“Families are always so grateful to receive something as simple as a toothbrush or a bottle of shampoo, as they often arrive in an emergency situation, with no time to pack their belongings.
“These little touches help us to create a warm and welcoming ‘home away from home’ environment for the families of children in hospital.”
