Lifestyle

Little girl lives with stomach, liver and bowel outside her body


Kelly and Sean with Laurel, and right, the two-year-old now (Picture: Kelly Phizacklea / SWNS)

When Kelly and Sean Phizacklea went for their 12-week scan, they were devasted to learn that some of their unborn baby’s organs were growing outside her body.

The baby had a major exomphalos – a condition which occurs when the baby’s abdominal wall does not form during pregnancy – and they were offered a termination.

But Kelly, 30, and Sean, 34, from Cambridge, decided to go ahead with the pregnancy and miraculously their little one defied the odds.

Their baby is now a feisty two-year-old called Laurel, who still lives with her stomach, liver and bowel outside her body.

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 it as any injuries to the exomphalos would be irreparable.

Kelly, a volunteer supporting parents in neonatal care, 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.’

Ultrasound scan of Laurel Phizacklea (Picture: Kelly Phizacklea / SWNS)

The couple found out they were expecting their first child in October 2017 and were excited about seeing their baby at the 12-week scan.

But it was there they found out the life changing news.

‘They said that our baby’s organs were on the outside of the body,’ Kelly said.

‘I couldn’t believe that was even possible.’

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.

Laurel when she was born (Picture: Kelly Phizacklea/SWNS)

Doctors also believed that the 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.’

Kelly had to attend a scan every two weeks to monitor the progress of her unborn child.

Kelly and Sean with their newborn baby Laurel (Picture: Kelly Phizacklea/SWNS)

The presence of exomphalos signals an 80% chance of other birth abnormalities, so Kelly underwent other tests, which highlighted that their child also 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.

Laurel now (Picture: Kelly Phizacklea/SWNS)

‘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 6 2018, surgeons performed a classic caesarean – meaning they cut vertically on Kelly’s stomach as opposed to horizontally.

This gave them more room to remove baby Laurel, as they had to be extra careful not to rupture her external organs – which would have meant certain death.

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.

Kelly said: ‘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 before being transferred to NICU.

They plan to operate when she turns three (Picture: Kelly Phizacklea/SWNS)

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.’

When Laurel was a month old, Kelly got to hold her for the first time.

Until then she had to remain on her back with the exomphalos suspended to avoid any complications.

Laurel stayed at Addenbrookes Hospital, Cambridge for three months and 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.

‘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.’

The couple have to protect Laurel because if she damages the organs, there’s nothing doctors can do.

The family are patiently waiting until Laurel turns three and can have her organs internalised.

Laurel has never known anything else and her parents are worried she will miss her tummy (Picture: Kelly Phizacklea/SWNS)

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 at King’s College Hospital, London.

‘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!’

But as Laurel knows nothing else, they are worried that the operation will be a big change for her.

‘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.’

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