Laurel Phizacklea wasn’t expected to survive birth after doctors diagnosed her with a major exomphalos – a condition which occurs when the baby’s abdominal wall does not form during pregnancy.
This meant that Laurel was born with her stomach, liver and bowel on the outside of her body.
But now aged two, Laurel – together with parents Kelly, 30, and Sean, 34 – is looking forward to the operation next year that will enable doctors to reinsert the organs into her body.
Most babies with the condition have the operation done at birth, but due to the unusually large size of Laurel’s exomphalos, doctors said she wouldn’t be able to have them internalised until she is three.
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Kelly, a volunteer supporting parents in neonatal care, and Sean, a car dismantler, from Cambridge, Cambs, were offered a termination following the scan but after much agonising decided not to. Their daughter, defying doctors’ predictions, was born at Addenbrookes Hospital on June 6, 2018.
Laurel was left with a protruding bump from her stomach 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 a close eye on her as any injuries to the exomphalos would be irreparable.
The bump doesn’t bother Laurel, who loves to cradle her exomphalos when her bandages are removed for bath time, often stroking it and saying ‘ah tummy’.
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Kelly 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.
“Laurel is a true inspiration and amazes us every day.”
Kelly and Sean discovered they were expecting their first child in October 2017.
It was after attending their 12-week scan to get their first glimpse of their baby that they were told 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.”
After a consultation at Addenbrookes Hospital the pair went home and shut themselves away and just ‘cried and cried’.
Kelly had to attend a scan every two weeks to monitor the progress of her unborn child.
The presence of exomphalos signals an 80 percent chance of other birth abnormalities, so Kelly underwent numerous tests in order to detect them.
She had to endure three echocardiograms to assess Laurel’s heart, an MRI to look at Laurel’s spine, Chorionic villus sampling – which is a biopsy of the placenta – to scan for chromosomal defects and frequent ultrasounds to review the size of the exomphalos.
These scans highlighted that as well as exomphalos, their child had a hole in the heart and congenital scoliosis – a spinal deformity.
Three weeks before Laurel’s birth, doctors also discovered the exomphalos had doubled in size – prompting medics to take both Kelly and Sean aside to tell them their daughter would not survive birth.
“We were so close and had been through so much already,” Kelly said.
“Hearing that was devastating – but they told us they would do everything they could to save her, despite the very slim odds of her survival.
“Although I knew it was very real and incredibly scary, part of me always thought: ‘This won’t happen to me, I won’t let it’.”
On June 6th 2018, surgeons performed a classic caesarean. This gave them more room to remove baby Laurel, as they had to be extra careful not to rupture her external organs.
Doctors warned both Kelly and Sean not to expect to hear their baby cry – so when they heard her cries both were overcome with relief.
“When we heard her cry out I couldn’t believe it,” Kelly said.
“Both Sean and I just burst into tears.
“We knew it was far from the end of it – but to hear her cry was a huge relief and from that moment we knew she was a fighter.”
Their daughter Laurel was born weighing a healthy 7lb 5oz, and put straight on a ventilator.
“We saw a glimpse of her as she was wheeled past,” Kelly said.
“I was just so relieved she’d got through the birth.”
After seven hours, Kelly and Sean were finally able to meet their daughter properly for the first time.
“Her tummy was swaddled in bandages,” Kelly said.
“We knew to expect it to look different – so we weren’t scared at all.”
It wasn’t until Laurel was a month old that Kelly got to hold her for the first time, as she had to remain on her back with the exomphalos suspended to avoid any complications.
Kelly and Sean were provided with a room at the hospital by the Sick Children’s Trust so they could be there 24/7 with their little girl.
Doctors worried that Laurel wouldn’t be able to breathe on her own, as it is common in exomphalos cases for the lungs not to have formed properly – but luckily for the family, Laurel proved doctors wrong.
After just three-and-a-half-months in hospital, 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.”
Laurel will undergo the operation at King’s College Hospital, London, where a surgeon has taken an interest in her case’.
“It is a scary thought, and there are definitely concerns,” Kelly said.
“But Laurel has already been through so much, and I am sure she will continue to take everything in her stride.”