Disclaimer: I am a doctor and a mum, but by no means an expert in short gut syndrome and/or home parenteral nutrition, and certainly not a professor of gastroenterology. The information on this website is accurate to my knowledge, but please always refer to your health professional if you are unsure.
We were thrown into the world of intestinal failure and parenteral nutrition when our second child, Laurie, was just 2 days old. He became critically unwell when his bowel twisted around on itself (a malrotation with volvulus) and cut off the blood supply. He underwent emergency surgery which unfortunately resulted in the removal of 90% of his small intestine.
As a result he now has intestinal failure secondary to something called Short Gut Syndrome, and is unable to get the nutrition he needs via eating and drinking. Instead, he has to rely upon nutrition through the vein (parenteral nutrition) which runs via a central line called a hickman line. The tip of this line sits directly in his heart.
We spent a few weeks on Neonatal Intensive Care before being transferred down to the Children’s Hospital which is where Laurie remains currently. He will eventually be going home on parenteral nutrition and we honestly have no idea what the future looks like. What will he be able to eat? Will he ever come of PN?
We felt completely lost in those first weeks and struggled to find any information to help us understand what was happening or what might lie ahead of us. We hope this website can act as a source of information and support for others who might find themselves in similar situations.
Navigating this world is incredibly daunting for so many reasons, but there is a lot of hope out there, and many reasons to be positive about the future.