A baby who was born with her large intestine outside her body defied the odds to survive and is set to celebrate her first birthday.
Lily-Rae Lawrence’s parents Melissa Thompson, 32, and Richard Lawrence, 34, first realised something was wrong when their 12-week scan revealed a ‘puff of smoke’ coming from their daughter’s abdomen.
The youngster was born with the birth defect gastroschisis, which occurs when the bowels exit the body via a hole near the belly button. Her small intestine was still inside of her.
Doctors feared a build-up of pressure in the colon, caused by the passageways narrowing, would make the large intestine rupture and could be fatal.
Lily-Rae – who endured her first operation at just four hours old – went under the knife three times and spent five months in hospital.
The youngster, of Sheffield, was finally discharged last September and is set to celebrate turning one on Thursday.
Lily-Rae Lawrence was born with her intestines outside her body. Doctors hoped wrapping the colon in a cling film-like material and placing it in a plastic bag (pictured) would enable gravity to reinsert her bowels in the correct position. However, her severe case required surgery
Lily-Rae (pictured left recently) is set to celebrate her first birthday after defying the odds to survive. Doctors worried a build-up of pressure in her bowel would cause it to rupture. Lily-Rae’s mother Melissa Thompson (pictured right) described the ordeal as ‘heartbreaking’
Speaking of his daughter’s condition, Mr Lawrence, who is also father to five-year-old Ruby, said: ‘The stomach was flat on the scan, but we could see something in the picture outside of her belly, her bowels were on the outside.
‘It looked like a puff of smoke outside her belly, our initial thoughts were pure worry, you get yourself in a panic trying to get your head around it.
‘It’s like the plumbing under your sink, but instead of the pipes being under the sink they are outside.’
Lily-Rae was born at 36 weeks weighing 6lbs 2oz. Her parents immediately saw something was seriously wrong.
‘It was just heartbreaking,’ Ms Thompson said.
‘We had no idea what would happen because her bowels did not look a good colour and we feared they were dead.’
The procedure failed to work due to Lily-Rae’s case being too complicated. She also required a feeding tube due to her short small intestine preventing her from absorbing nutrients
Lily-Rae’s father Richard Lawrence (pictured together left) knew something was wrong when her 12-week scan revealed a ‘puff of smoke’ coming from her abdomen. The youngster is pictured right after one of her three operations to reinsert her bowel into her abdomen
After a five-month stint in hospital, Lily-Rae’s parents (pictured with their five-year-old daughter Ruby) were able to take their daughter home. This was after her third surgery was a success, with her 17cm bowel growing to 23cm, and her small and large intestine untangling
WHAT IS GASTROSCHISIS?
Gastroschisis is a type of abdominal wall defect.
It occurs when a child’s abdomen does not fully develop while they are in the womb.
This causes the intestines to develop on the outside, exposing the organ to air at birth.
Gastroschisis’ cause is unclear, however, it is becoming more common, particularly in mothers under 20.
It affects around one in 3,000 babies every year.
Treatment is required immediately after birth.
This typically involves surgery to put the intestines into the body.
Before surgery, affected children are wrapped in a type of cling film to prevent further damage and keep the baby warm.
If the operation is successful, most babies stay in hospital for around a month, but go on to live normal, healthy lives.
Source: Great Ormond Street Hospital
Doctors planned to reinsert Lily-Rae’s bowels after initially wrapping them in a cling film-like material in a plastic bag.
They hoped gravity would help place her colon back into its correct position several days later.
‘But it was not a normal case, it was very complicated and required more surgery,’ Mr Lawrence – an electrical engineer – said.
Of the 30cm of colon outside of Lily-Rae’s body, only 17cm was ‘alive’.
Doctors were forced to cut away the dead tissue and create two stomas to divert faeces out of her little body.
They hoped her remaining bowel tissue would survive on the blood vessels she had and then grow.
The doctors also worried Lily-Rae may have short bowel syndrome, which affects a person’s ability to absorb nutrients, fat and calories via their small intestine.
‘This could have meant she would have been on a drip for up to as much as 21 hours a day and could have even spent a number of years in hospital,’ Mr Lawrence said.
‘At worst [she] would have eventually had to come home on total parenteral nutrition (TPN).’
TPN is a way of supplying the nutrition a body needs by bypassing the digestive system and dripping a vitamin-rich solution directly into a vein.
Ruby (pictured left with her mother) was thrilled to have a sister but it would be 149 days before Lily-Rae got to come home. The five-year-old (also pictured right with Lily-Rae) loves her sister very much. And the whole family are thrilled the ‘fighter’ is now perfectly healthy
Lily-Rae (pictured left with her sister) is now a ‘happy’, ‘lovely’ and ‘placid’ baby. Pictured right in hospital, the youngster went under the knife at just four hours old. Doctors then had to cut away her ‘dead’ bowel tissue and hope the remaining tissue would grow
But things started to look up after Lily-Rae’s third operation, which investigated whether her small and large intestines had untangled.
‘The surgeon was beaming at us,’ Mr Lawrence said. ‘He sat us down and explained her bowel had grown to more than 23cm and parts had untangled.’
Lily-Rae was discharged after 149 days in hospital and has gone on to be a healthy baby.
‘Everything that was thrown at her she came through fighting, she’s made a perfect recovery with no concerns,’ Mr Lawrence said.
‘She is so happy now and she keeps fighting, she’s a lovely and placid baby.’
Ms Thompson added: ‘Some of those days in hospital were some of the worst of our lives and felt like the longest five months, it was heartbreaking watching her go through all of that.
‘We are just thankful that she is home safe and doing well, her first birthday will be extra special knowing how far she has come along since then.’