Amanda Smith was advised to abort her child after the 11 week ultrasound showed the baby to have organs outside her body. But the mom was not ready to give up, and today with nine-month-old Piper Smith in her arms, Amanda is thankful she made the right choice.
Doctors gave baby Piper just 25 percent chance of survival when she was born. She had the bladder, intestine and liver outside her body.
29 year old Amanda was 11 weeks pregnant when the scan revealed her baby had a rare weakness of the abdominal wall. This meant that Piper’s organs were growing outside her body and doctors believed she would not survive the pregnancy or the labor. They found she had abnorminal lumps growing outside known in medical terms as bladder exstrophy and exomphalos.
Amanda a mother of two from King’s Lynn, Norfolk, said,
‘The doctors offered me a termination, but I didn’t feel I could have one – I wanted to give her a chance. And she has been a miracle. She is a little fighter.’
Amanda and her husband 23 year old Wayne decided to continue with the pregnancy.
Amanda was due to be induced at 38 weeks, but gave birth at 35 weeks on June 26th at the University College Hospital, London.
The baby girl was born with all her organs functioning normally though some were outside the body.
Amanda says, ‘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 wasn’t 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 [bladder exstrophy] they said it went down to 25 per cent. It was terrifying thinking she might not make it.’
Piper spent four days in intensive care and was eventually sent home from Great Ormond Street Hospital after five weeks. But at 8 weeks she was again brought to the intensive care with a twist in her bowel. After five days she was sent home.
At nine months Piper has grown a skin over her liver and intestine which looks like she has a hernia rather than having her organs outside. Her bladder sitting on the outside of her stomach is wrapped in cling wrap to keep it moist.
The other challenge for the little girl is also that she was born with spina bfida a condition which the family hopes will get better with age, though she will need a colostomy bag to pass solids until she is at least four-years-old.
Her mom says, ‘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. 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.’
She is also amazed at how a normal household product like a cling wrap is helping to keep her daughter alive. The cling film wraps the bladder and helps keep it moist as well as reduces the amount of fluids and body heat lost from her abdomen. Amanda has to change it during every diaper change, about five times in a day.
She said, ‘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.’
Doctors say that it is rare to find both conditions together in babies. Bladder exstrophy is a congenital birth defect which occurs in one in every 40,000 births and affects two to three times more boys than girls.
The problem occurs between 4 to 10 weeks of pregnancy when various organs, tissues and muscles begin to form layers that separate, divide and fold. According to doctors the skin over the lower abdominal wall does not form properly so the bladder gets exposed.
Exomphalos, the other condition she suffers from, 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.
The couple are now waiting for a six-hour operation to put Piper’s organs back inside her body and then stretch muscle over her stomach. Once the surgery is successful Piper will lead a life like any other girl her age.
