The Dilemma of a Visit to the Emergency Room

One of the hardest things of having a child with a Rare condition is what happens in an Emergency. In an emergency you dont have time to call your "medical" team and you face the prospect of arriving at the emergency department with your child needing urgent medical care and explaining that your child has a rare condition.

You quite often met with black stares and even with eyes rolling and you wish for just one moment that it was a dream. But its no dream and you are quickly snapped back out of it. You stick to basics to get the immediate problem sorted.

Take a moment and think back to times when you have had to take your child to an ER room, a GP, a dentist. Your Given forms to complete, there is always a section on previous medical condition. Diabetes is always listed there but we always have to tick "other" and list Neonatal Diabetes/Pancreatic Agenesis.

I always try and give a very brief explanation. I say "Sarah has Pancreatic Agenesis, so she has Neonatal Diabetes and complete Pancreatic Insufficiency, she is on an Insulin pump and Creon supplements" Then the Drs, Nurses, students come flying in with questions.

Its a very frustrating position to be put in, you know your childs condition inside back to front, but your in a critical situation most of the time and your in the ER because you can no longer deal with things at home. But yet you stand there in front of Drs and Nurses that not only have never met your child before but they have never heard of her condition. Yet you stand there knowing your childs life is in there hands. You are inredibly powerless in a way.

The point I am trying to make here I guess is about education. Every emergency visit for us is met with stares, we get glances from every direction. We get concerning glances from Drs, from nurses, from cleaners and yes even from other parents in the waiting room.

My child may look no more ill from yours, or she may be screaming at the top of her lungs and no I cant "Shut her up". We may bypass traige and be put to the front of the queue and taken through immediatly but that is because our childs condition can become critical in seconds. Its also because a simple cough or cold can be life threatening for Sarah.

You may be a person that works within the healthcare industry, ot studying in the field. I know sometimes we can come accross as being "difficult" parents, we dont get up each morning with the aim of making your day harder but as the parent of a child with a rare condition it is our job to make sure that our child's needs are met. We dont expect you to have a full understanding of there condition because lets face it, you are unlikely to come accross it again, but work with us. We live with it 24 hours a day 7 days a week. Talk to us, explain things to us. I am always happen to educate people on Sarah's condition, but understand when you show fear in your eyes, when you hesitate, when you become nervous you are making me even more nervous.

As a parent I will never growl under my breath whenever I see a child come to emergency not looking an worse than my own child who has been waiting for hours to be seen already go immediatly through for assessment.

Often the real dangers are hidden under the surface