This adorable baby girl has survived being born ‘inside out’ – and is now being held together with CLING FILM.
Piper Smith, aged nine months, was given just a 25 per cent chance of survival when she was born with her bladder, intestine and liver outside her body.
Her mother Amanda Smith, 29, was told her unborn child had a rare weakness of the abdominal wall at her 11 week scan after doctors spotted unusual lumps.
It meant unborn Piper grew in the womb with her liver, intestine and bladder outside her body – and was not expected to survive labour.
But amazingly the infant was successfully born at 35 weeks with all her organs in tact and fully-functioning.
Amanda and husband Wayne, 23, are now waiting for surgeons to perform a six-hour operation to put her organs back inside her body and then stretch muscle over her stomach.
It means Piper is now living with her bladder sitting on the outside of her stomach – wrapped in cling film to keep it moist.
Proud mother-of-two Amanda, from King’s Lynn, Norfolk, said she had never regretted turning down the chance to abort her “little fighter”.
She said: “It was really scary when Piper was born. She was very poorly. It was like she was inside out.
“It was really hard as I was not allowed to pick her up as she had to go straight in to the incubator.
“The doctors said she had a 50 per cent chance of survival with her intestine and liver outside the body.
“When they saw the bladder was outside too they said it went down to 25 per cent. It was terrifying thinking she might not make it.
“I have to check on Piper more than a normal baby – she cannot roll on her side as her organs are there so we have to be very careful.
“I don’t think Piper is aware of her organs being on the outside rather than on the inside. She is not in any pain.
“She is starting to sit up now and she is a very happy baby. We are really hoping that she will be able to walk eventually.”
She added: “The doctors offered me a termination, but I felt I could not have one – I wanted to give her a chance. And she has been a miracle. She is a little fighter.”
Medics diagnosed Amanda’s unborn baby with bladder exstrophy and exomphalos after spotting unusual lumps on her scan at 11 weeks.
Doctors said the foetus was unlikely to survive, even is she made it through childbirth but Amanda and Wayne decided to keep her.
Amanda was due to be induced at 38 weeks, but and was rushed by ambulance to specialists at University College Hospital, London, at 35 weeks, on June 26.
Piper spent four days in intensive care and was eventually sent home with Amanda from Great Ormond Street Hospital after five weeks.
But at eight weeks she was rushed back to Great Ormond Street with a twist in her bowel and spent five days in intensive care.
Piper, who also suffers from spina bifida – her family hope will be correctable – will need a colostomy bag to pass solids until she is at least four-years-old.
Amanda has to change the cling-film dressing on Piper’s bladder every time she changes her nappy – about five times a day.
It means the family have to keep industrial size cling film rolls in their baby changing bag.
Piper’s liver and intestine are still outside her body, but skin has grown over them making it look like she has a hernia.
All three of Piper’s organs will be put back inside her body and the muscle and skin stretched over her stomach in a six-hour operation at Great Ormond Street Hospital.
Amanda, who delivered Piper naturally, said: “Skin has grown over her intestine and liver so it looks like she has a hernia.
“It is amazing that a household product like cling film is doing such an important job and keeping Piper alive.
“We have to change the cling film every time we change Piper’s nappy so that is about five times a day.
“The hospital gave us industrial size cling film rolls so we have enough supplies. We keep rolls of it in our changing bag.”
Amanda, a former customer adviser, said: “The doctors said it is rare for a baby to have both the conditions that Piper does.”
Wayne, 23, is a trainee mechanic.
Cling film is used to wrap Piper’s bladder as it reduces the amount of fluids and body heat lost from her abdomen.
Bladder exstrophy, a congenital birth defect, occurs in one in every 40,000 births and affects two to three times more boys than girls.
It is not known what causes bladder exstrophy, but the problem occurs somewhere between the fourth and tenth week of pregnancy when various organs, tissues and muscles begin to form layers that separate, divide and fold.
The skin over the lower abdominal wall does not form properly, so the bladder is open and exposed on the outside of the abdomen.
Bladder exstrophy is not thought to be inherited, but ongoing research is looking into this.
If you have a baby with bladder exstrophy the chance of having another baby with bladder exstrophy is increased to about one in 100.
The prognosis for people born with bladder exstrophy is good.
People born with bladder exstrophy who go on to have children have a one in 70 chance of giving birth to a baby with bladder exstrophy.
Exomphalos, which affects one in every 2,500 children born each year, occurs when a child’s abdominal wall 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.
But in exomphalos, the intestines and sometimes other organs such as the liver – as in Piper’s case – remain inside the umbilical cord but outside the abdomen.
Medics do know yet know what causes exomphalos.
The prognosis for children born with exomphalos varies depending on the seriousness of their condition, but most grow up to live normal lives.
Great news about Piper!
I’m organising a get together for parents and parents-to-be of exomphalos children on Saturday 6th April (a week tomorrow) at St Mary’s Centre, Haddenham, Buckinghamshire.
If anyone is interested in joining us, please contact me via my email address email@example.com
We have a nearly 5 year old son, Ben, who was born with an exomphalos too. He’s a healthy active little boy now enjoying his first year at school.
Debbie x x x