Gastroschisis and Me – 37 Years on
** Warning – This post contains a photograph of gastroschisis that some readers may find graphic **
When I was born 37 years ago, I was born with a birth defect called Gastroschisis. This is a birth defect of the abdominal wall, where the wall does not form completely, so when the intestines move from the umbilical cord to the stomach, the bowel remains outside of the body and is exposed to air when born. The survival rate was not high when I was born and in my case was not detected before birth. Today they check for this abnormality in scans and can be identified either at the 12 or 20 week scan. This enables the planning of delivery and aftercare can be made, added with the advances in how they treat this, has seen an increased of the survival rate from 30 to 40% to over 90% in the 1990s¹
When I was born, I had very low birth weight and no one was expecting Gastroschisis. I was born in a small hospital, and had to be air lifted to Royal Children’s Hospital in Melbourne. As the operation to rectify the condition were underway, it was noticed that part of my bowel had gangrene, so had to be removed. This resulted in a number of operations and complications. There was a number of times my family got the call to say I wasn’t going to pull through but I did. This is actually how I was named, my Nan named me Faith as they had faith I would make it.
After 34 operations and over a few months, I was finally on the mend. With the statistics , lack of knowledge, and location of my birth all working against me, I pulled through. The doctors gave me the best care they could.
As I grew older, I had some issues with the adhesions, I had a few more operations over the years for bowel obstructions and with less bowel I have some issues getting nutrition from some foods and have allergies to others.
And now 37 years on, I am still doing fine. I don’t have as much muscle in my abdomen but never had a hernia so far, which is something that can occur . Although, since I have never had a belly button, I do have a bit of belly button fascination/envy, and never got a proper bump with my babies because of the scars.
Long term issues from this have been very limited and more due to the complications from the multiple operations and the removal of bowel.
It has always amazed me how medical knowledge advances so quickly. The work in research goes on behind the scenes and doesn’t always hit the headlines but the work is amazing.
Source:
¹ – http://www.bmj.com/content/343/bmj.d6749
For more information on the condition please see the information provided by GOSH HERE