- a hernia in which abdominal organs protrude into a baby’s umbilical cord.
Today is Omphalocele Awareness Day. Yes, there is such a thing!
I am talking about it today, because an “Omphalocele” made up part of the full disorder called Pentalogy of Cantrell, that our son Mitchell has. Chances are that you have not heard of either of these, so today is a good day to spread a little bit of awareness.
Omphaloceles are not that uncommon, around 1 in 5,000 babies may be born with one. It is a birth defect in which an infant’s intestine or other abdominal organs are outside of the body because of a hole in the belly button (navel) area. The intestines are covered only by a thin layer of tissue and can be easily seen. Our Doctor explained it to us that the stomach area just didn’t zip up at about 18 weeks and because the organs are not enclosed when they should be they expand and grow.
In Mitchell’s case, he grew a Giant Omphalocele, and there were four other defects in his midline area affecting the heart, sternum and diaphragm, giving him a diagnosis of Pentalogy of Cantrell. Many other babies are born with small and stand alone omphaloceles, and these are sometimes fixed right after the baby is born. In other cases, like us, they are a symptom of another condition.
Treatment of omphaloceles varies greatly depending on their size and other factors. A small omphalocele with no other problems may be repaired straight away, or in our case, Mitchell had a two year stay in hospital while he grew skin over the area and to give his lungs time to develop enough to go home. His repair surgery was not completed until he was 12 years old and it involved having implants put in his sides which were inflated slowly over 6 months (ended up taking 18 months due to infection) to stretch the skin to make room for the repair. Mitchell was a true omphalocele warrior getting through this process.
In order to protect Mitchell’s privacy I don’t usually share photos of his omphalocele, but today I am including a couple to raise awareness and I hope that you can appreciate a little more just what a big journey he has lived through and just how brave he has been. If you have not seen an omphalocele before, it may help you to understand what it is and why it affects balance, digestion and means that there is no protective muscle layer over the organs. These are part of the reason, we are so hyper vigilant in watching out for falls and protecting his abdominal area.
In between these years, there were many periods that the skin broke down and it required daily dressing changes. And for us to keep Mitchell from scratching and touching. The omphalocele has just been a part of his journey, the effect that this has had on him has meant a tracheostomy for breathing for 13 years and an NG tube since birth.
When we first knew of Mitchell’s omphalocele (it was detected in an ultrasound), I joined a group called the MOO’s – Mothers of Omphaloceles, hence the symbol being a little cow print ribbon. Just in case you were wondering.
I hope that this teeny snapshot helps you to understand part of his and our journey.