An ‘inside out’ baby who was born with her organs in a fragile
sac resting on top of her stomach will soon receive life-changing
surgery. The rare condition, in which her organs are in a bag of skin
called an ‘Exompholas’ attached only to her belly button, meant she
could have died if the sac had ruptured during delivery.
Her mother, Joanne Marshall, 35, explained: “The Exompholas is really just a sack made of very thin skin from the umbilical cord. We were told it could rupture and Nell would need immediate surgery to keep her organs sterile. Thankfully that didn’t happen. She is now one and her organs are still in the little bag of skin, on the outside of her belly, but it was taped to her stomach to encourage skin to grow over it.”
Nell was later diagnosed with an aortopulmonary window, a hole in her heart. The condition is incredibly rare, accounting for only 0.1 per cent of all congenital heart defects, and Nell had to have an operation in which surgeon’s used pig’s skin to correct the hole. She also suffered pneumonia, breathing problems and a raft of other complications.
“Initially the Exompholas was the biggest problem, but when we found out about the hole that became the top priority. The doctors said it was a very rare condition and they hadn’t seen a case like it for 30 years. They joked that they had to use textbooks from the 70s to treat Nell but thankfully the operation was a success,” Mrs Marshall added.
Having dealt with the heart problem, Mrs Marshall and her husband were allowed to bring Nell home with them after three months in the hospital, but her Exompholas remained. The family were told that Nell had to grow before she could undergo the invasive surgery to treat it, so has been living with her condition for a year.
Her mother, Joanne Marshall, 35, explained: “The Exompholas is really just a sack made of very thin skin from the umbilical cord. We were told it could rupture and Nell would need immediate surgery to keep her organs sterile. Thankfully that didn’t happen. She is now one and her organs are still in the little bag of skin, on the outside of her belly, but it was taped to her stomach to encourage skin to grow over it.”
Nell was later diagnosed with an aortopulmonary window, a hole in her heart. The condition is incredibly rare, accounting for only 0.1 per cent of all congenital heart defects, and Nell had to have an operation in which surgeon’s used pig’s skin to correct the hole. She also suffered pneumonia, breathing problems and a raft of other complications.
“Initially the Exompholas was the biggest problem, but when we found out about the hole that became the top priority. The doctors said it was a very rare condition and they hadn’t seen a case like it for 30 years. They joked that they had to use textbooks from the 70s to treat Nell but thankfully the operation was a success,” Mrs Marshall added.
Having dealt with the heart problem, Mrs Marshall and her husband were allowed to bring Nell home with them after three months in the hospital, but her Exompholas remained. The family were told that Nell had to grow before she could undergo the invasive surgery to treat it, so has been living with her condition for a year.
No comments:
Post a Comment
I like knowing my fans better. Kindly drop your comment using your name/url/Google accounts and not as Anonymous. Thanks for your understanding.