A mum whose son was born with organs outside his body says he is fighting for his life after doctors described him as a "ticking time bomb".
Jade Earaker and her partner, Rhys Bradford, were left "heartbroken" after their little boy, Zachary, was diagnosed with gastroschisis, a life-changing birth defect, at Wishaw General Hospital in June 2021.
Now, after undergoing multiple surgeries, the boy was recently diagnosed with intestinal and liver failure - and will need a double transplant.
Mum Jade, 22, and dad Rhys, 27, decided to share the "scariest moment" of their lives to raise awareness of his rare condition.
The mum-of-two, from East Kilbride, Scotland, said: "We had no idea if he was going to survive his first surgery, let alone the rest, and we were left distraught.
"When doctors told us the news, it was single-handedly the scariest moment of my life so far, especially as his odds are so slim.
"Rhys and I were told to prepare for the worst."
At 12 weeks, a hole within the abdominal wall was detected during a routine scan, which caused the tot's intestines to form outside his body.
In a bid to ensure regular development, emergency surgery is typically offered to place the organs back inside – but as he was too small and the condition of his bowel was deteriorating, it was not possible.
Soon, they were visiting the hospital up to three times a week for regular check-ups, as Zachary started to show signs of deterioration.
On October 4, 2021, the boy's bowel perforated and an emergency C-section was performed in order to rush him to the theatre immediately.
She said: "Luckily, Zachary was the youngest ever survivor of the partial bowel resection surgery, defeating all odds and the moment we finally got to hold him was surreal.
"Now, he's spent the majority of his life on a ward in hospital and recently was diagnosed with intestinal and liver failure, in which he will need a double transplant.
"We were explained the waiting process for this and that the wait could be lengthy as the other organs within the donor must be size efficient to match.
"This absolutely broke our hearts, as the donor would need to be a baby and these transplants are uncommon – and successful ones only have a life expectancy of five to 10 years."
Since, he had two further surgeries to lengthen his bowel, along with heart surgery, where he developed sepsis twice and a blood clot in his left leg.
Now, the gastro team was attempting to increase his gut tolerance with total parenteral nutrition, a method of feeding that bypasses the gastrointestinal tract – however, the long-term effects of that have been detrimental to Zachary's liver.
Currently, he weighs just 6.5kg with little sign of weight gain and as his condition is quickly deteriorating, the family is hopeful for a transplant match soon.
Speaking about their emotions toward the whole ordeal, she said: "Every small step forward is a huge win for us.
"But, we've had five failed matches so far and it's left us heartbroken.
"We've never felt so hurt and let down, but no one was to blame, it was just poor luck."
Despite the trauma faced, the family are remaining hopeful, and are in awe of how strong their little boy is.
Jade, who is also mum to Reuben, two months, added: "Zachary is our absolute world and I’m beyond proud to call myself his mummy.
"Everything he's had to overcome and fight through, it's safe to say he's a real-life superhero.
"He gives us a reason to keep going when things are tough and reminds us how grateful we should be every day to hold him.
"The purpose of sharing his story is not only to boast about how inspirational he is, but to raise awareness for organ donation, particularly in children.
"It's important for everyone to be aware of the tremendous upside that organ donation offers, but there's also a need to recognise that children's organs are needed too.
"This seems to be overlooked and if families are aware of the impact donation can have on children like Zachary, it could impact their decision if they were ever in a similar scenario.
"But for now, we’re hoping and praying every day for a match to come up soon – it would be a dream come true."
Gastroschisis is a birth defect where a hole in the abdominal wall beside the belly button allows the baby's intestines to extend outside of the baby's body, explains the CDC.
The hole can be small or large and sometimes other organs, such as the stomach and liver, can be found outside of the baby's body as well.
