A Little Girl Living With Her Stomach, Liver & Bowel Outside Her Body In UK.
Laurel Phizacklea, two, wasn’t expected to survive birth because of a cruel condition which occurs when the baby’s abdominal wall does not form during pregnancy.
Her parents, Kelly, 30, and Sean, 34, were offered a termination at their 12-week scan when doctors diagnosed their unborn child with a major exomphalos.
But Laurel’s parents decided to give her a chance and the tot defied medics predictions when she was born at Addenbrookes Hospital, Cambridge in June 2018.
Most babies with the condition have the organs reinserted into their body at birth, but due to the unusually large size of Laurel’s exomphalos, doctors warned she wouldn’t be able to have them internalised until she is three years old.
Laurel was left with a protruding bump from her tiny tummy – which her parents have to wrap in bandages to support her external organs, in case the weight of them were to pull anything else out of her body.
Skin has formed around the organs, and Laurel can eat, drink and go to the toilet like any other toddler – but her parents have to keep an eye on their ‘daredevil’ tot, as any injuries to the exomphalos would be irreparable.
The mound doesn’t bother the little girl, who loves to cradle her exomphalos when her bandages are removed for bath time, often stroking it and saying ‘ah tummy’.
Kelly, a volunteer supporting parents in neonatal care, from Cambridge, Kent, said: “I don’t know how we remained positive throughout my pregnancy with Laurel.
“It really looked as if she wouldn’t survive birth – but Sean and I never gave up hope and she has done us so proud.
“Her pouch of organs on her tummy is a part of her and she doesn’t let it get her down.
“Laurel is a true inspiration and amazes us every day.”
Laurel and Sean, a car dismantler, were over the moon when they discovered they were expecting their first child in October 2017.
The couple excitedly attended their 12-week scan to get their first glimpse of their baby – but were blindsided by the news that something was wrong.
“They said that our baby’s organs were on the outside of the body,” Kelly said. “I couldn’t believe that was even possible.”
Doctors explained that the couple’s unborn child had exomphalos – a type of abdominal wall defect which occurs when a child’s abdomen does not develop fully while in the womb.
Early in all pregnancies, the intestine develops inside the umbilical cord and then usually moves inside the abdomen a few weeks later.
In exomphalos, the intestines – and in this case the stomach, liver and bowel – remain inside the umbilical cord but outside the abdomen.
Doctors also determined that Kelly and Sean’s baby had a spinal deformity – and the pair were offered a termination.
“We couldn’t quite believe what we were hearing when they offered us an abortion,” Kelly said.
“People kept saying: ‘It’s OK, you can try again’ – but I didn’t want another baby. “I was so in love with this baby and we knew we would do everything we could for her.”
Amazingly, after just three-and-a-half-months in Addenbrookes Hospital, Cambridge, Laurel was able to return home.
“We knew she’d need the big operation further down the line, but just having her home was so special,” Kelly said.
“We quickly realised she was an adventurous baby, so knew we’d need to keep an eye on her so she wouldn’t damage her exomphalos.”
Surgeons warned the couple that if Laurel damages her external organs, there’s nothing they can do – so the family are patiently waiting until Laurel turns three and can have her organs internalised.
If inserted into the body too soon, and when her frame is too small, the diaphragm wouldn’t be able to cope with the sudden lack of space with which to operate.
As it is, Laurel will have to ‘learn how to breathe again’ when she undergoes the operation at the beginning of 2021.
“Even though we try to make sure she’s sensible and careful, it’s so hard with a two-year-old,” Kelly said. She still tries to jump off the arm of the sofa, and loves being in a muddy puddle splashing about outdoors.
“She’s a bit of a daredevil – which can be a little stressful but that’s all part of why we love her!
Although it will be a relief for both Kelly and Sean when they don’t have to worry about their daughter’s every move, they do worry that it will cause a certain amount of separation anxiety for the tot.
“She loves her tummy so much,” Kelly said. “She rubs it in the bath when I take the dressing off to wash her and says ‘ah tummy’.
“It’s very cute, and she couldn’t be prouder of it. But I do worry about how she’ll react when it’s not there anymore.”