Three-year-old Laurel Phizacklea, born ‘inside out’ and until now unable to live a normal life, is home, safe and well after lifesaving surgery.
Three months into mum Kelly's pregnancy, Laurel had been diagnosed with a major exomphalos at Addenbrooke’s Hospital in Cambridge.
Kelly and her husband Sean were advised Laurel may not survive.
“An exomphalos occurs when the abdomen muscles don’t close properly so some of the abdominal organs stay outside,” Kelly explained.
“Laurel’s was classed as major as it included her stomach, liver and bowel.”
Her intestines, stomach, liver and bowel remained inside the umbilical cord but outside the abdomen, and as soon as she was born, she was put onto a ventilator.
“There was a stage when we first came home from hospital that you wonder if you will ever be able to live a more normal life,” said Kelly.
But having undergone an intricate operation, Laurel is, extraordinarily, now fit, active and raring to enjoy the full force of life.
And as her road to recovery continues, she is excited to show off her new look.
“I think we forgot about how she would feel because that’s all she’s known for three years, and to suddenly go to sleep, wake up and it’s gone,” said Kelly.
“Now, she’s getting to the stage where she likes to show off her new tummy!”
The homecoming has seen a remarkable family effort.
Kelly’s brother Lee Wiseman and his team have created a wonderful back garden for Laurel as a ‘well done’ gift.
“It’s 100 per cent the most satisfying job I’ve done,” Lee said.
There’s rarely been a homecoming like it.
After multiple echocardiograms, including an MRI scan on her spine in case of paralysis, Laurel was also diagnosed with congenital scoliosis, a spinal deformity and had a hole in the heart.
Kelly recalls fortnightly scans to monitor her unborn child’s progress.
“After she was born, Laurel spent 13 weeks in the neonatal intensive care unit (NICU) at Addenbrooke’s; the staff there were amazing.”
Three weeks before Laurel’s birth on June 6, 2018, Kelly and Sean, of Kennett were told of the risks.
They were told their unborn daughter may not survive birth as the exomphalos had expanded.
But the couple persevered.
“They wheeled Laurel past my head for me to have a little look at her,” Kelly recalled.
“They are absolutely brilliant at Addenbrooke’s. The support we’ve got from them, they were like our family and will always be grateful for all their care.”
It is common for children with an exomphalos to have their organs reinserted at birth as skin forms around the external organs.
Laurel was able to come home albeit with a protruding bump on her stomach.
But due to the unusually large size of Laurel’s exomphalos, her parents were told she would have to wait until she was three-years-old for her organs to be internalised.
This was so there was enough space for her diaphragm to work in while her frame is not too small.
“She came home with her organs on the outside and they had to be dressed at all times,” said Kelly.
“This past year, she’s had a compression belt to try and push the bump in.”
Laurel saw a specialist at King’s College Hospital in London last month.
And she was home within a week.
“All her organs were completely in the wrong place inside, so the surgeon had to reset her, take everything out, put it in the right place and sew her up," Kelly said.
“To be home so quickly, you sometimes worry it’s too good to be true.
“We were having to remind her when we got home that she’s had a major operation and needs to calm down!”
Now, life is rather different for Laurel, who had been fed through a tube for 10 months.
Kelly said there was no major homecoming event for her daughter, who has been in and out of hospital since birth, and that she will always maintain a close eye on her child.
“Laurel’s back to her normal self. She’s always been really active, a very outdoorsy child,” she said.
“It will now be about monitoring her. We thought she’d need some surgery on her spine, but at the moment, it will depend on how much it progresses.
“The one thing we didn’t think about which we should have thought of more was how it would impact her psychologically.”
When Laurel first came back home, she was scared to see her new-look stomach and because of her fear, was scared to change clothes.
But she has been able to adapt, and now there is a feeling of relief amongst friends and family.
“We’ve gone from issues with her breathing when she could have been paralysed or undergone multiple spinal surgeries, to doing what every normal parent has to worry about,” said Kelly.
“We haven’t got those additional worries as well, so it’s such a big relief.”
As well as the exomphalos being removed, Laurel received the news from her neurosurgeon at Addenbrooke’s that her spinal condition has improved.
Laurel, beaming with a smile, is preparing to attend pre-school for the first time this September before making the step up to primary school next year.
“I think that’s going to be a big milestone for her,” Kelly said.
“I feel a lot freer and for her, I want her to now be able to do more things independently, like playing with friends.
“They always say how the first two years of their life affects how they develop, and it does make you worry as a parent because she’s spent a lot of time in hospital.”
This time in hospital, Kelly thinks, has not seemed to have affected Laurel’s character who is now eating better since her last operation.
The toddler has not known much else since her birth, or the challenges posed on her family, which have now been alleviated.
“One of the biggest challenges for us was during the pregnancy because there were so many unknowns,” she said.
“She can now do things more independently and it feels like we haven’t got that hanging over our heads; we can get on and live life.”
One way of living life is in the garden which has been transformed since Kelly and Sean moved in last December.
As well as socialising with friends and relatives, there will be a chance for Laurel to develop other skills, too.
“We’re doing a wildflower/allotment section so it’s about learning; she loves anything to do with nature and animals,” said Kelly.
“It will also help with her physical development. She still has physio and that’s what they encourage, any climbing skills or anything to strengthen her spine.”
Since falling pregnant, Kelly has been running a Facebook page supporting families who have gone through the same or similar experiences.
She has received messages from across the world, including India and Australia, about exomphalos and Laurel’s condition.
But there is one piece of advice that Kelly is keen to share.
“I’d always say to try and find out as much as you can about the condition,” she said.
“If you feel differently to the healthcare professionals, make sure you speak up as you’re there to speak up for yourself and your baby.
“Some medical staff may not have heard of this condition, so sometimes, you’re the one who has to explain to them what it is.”
Laurel is back to her usual self, full of energy and constant happiness.
Kelly admits she is one of the lucky ones compared to other first-time mothers and families.
“We’re so fortunate because there are lots of other children who have far more complex needs than Laurel,” she said.
“We’ve still been able to go out and visit places, where some children have to spend most of their life in hospital, so we’ve always been very lucky.
“We’ve been building up to this since the 12-week scan in 2017 and now it’s all done; that’s the chapter of our life finished.”
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