This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. In this latest piece, Julie writes about terrifying emotional and physical circumstances she recently overcame in the midst of her 49th surgery. In a very touching and poignant way, Julie describes experiences that most of us can hardly imagine. If you would like to read the whole series, please scroll to the bottom where you will find links to the other posts in this series. – Bryan

By Julie Hemker

Julie Hemker, author of “Living with Sacral Agenesis” series on TDWI

I had to have a second “emergency surgery” after the primary surgery last month due to seroma (fluid buildup below and around the incision) causing pain and reoccurrence of neurological symptoms. I feel changed somehow. Surgery is not new to me with sacral agenesis. I mean this was my 49th surgery; how could it be that different? It was me. I made it through the first surgery as planned and was ready to recover and get on with life as planned – as on the sheet the surgeon talks to you about. Then…life happened. So I became very ill from the pain and all the fluid pushing on the surgery site from within.

It was all so fast. I saw the surgeon on a Tuesday, had many blood cultures, underwent a very painful MRI where I laid for 38 minutes on my back in the machine (normally they don’t bother me), followed by the drive home from that hospital. It was too much. The MRI showed massive fluid buildup with no knowledge of whether it was infected or not. I had fevers, chills, very fatigued and just exhausted – and I looked it. By Wednesday, the next day, I was admitted – and Thursday was surgery. Infectious Disease was called in to manage the antibiotics which would be used.

Then, within an instant, something changed in me. I was told they would insert a picc line which is used for long term medication use and was told I would probably go home from the hospital with it for a couple weeks. I don’t know what happened. It was like a scene from a movie. Suddenly I saw all that I try to keep in a neat little box, in my mind, filled with memories of the children’s hospital where I grew up having so many surgeries. All my memories flooded out. Back when I was a child we didn’t have separate wards at the hospital, so I roomed with many children with cancer, Cystic Fibrosis, and more. I began to hear the children cry from one specific night when my cancer-stricken roommate was very ill and taken to ICU. I remember how sick she was and the desperation in her parents’ eyes. She had a picc line, I thought. I began crying. I don’t really do that in the medical setting because it keeps me from being focused on what’s next. I really was so deathly afraid of this picc line. I equated it to all the suffering I saw at the children’s hospital and I wasn’t prepared to go there in my mind. But…Pandora’s Box was opened with one word.

In the world of medicine a picc line is not a big deal. I know that now after the nurse educated me. I thought it was something else and pictured awful things. However, my surgeon had them insert it when I was under anesthetic because I just couldn’t stop reacting to that word and talking about my children’s hospital and what I remembered. Over and over it replayed in my mind. I was so eternally afraid. I felt like a 7 year old child again; helpless to what was going on around me. It must have also been different for me because I had this surgery in a hospital I had never been to before. My whole life seemed to flash in front of my eyes. I just felt so scared and lonely. I forever thank my surgeon for having the picc line inserted while under anesthetic.

I am home now, feeling safe with my family and loved ones. Even now, I know how delicate our memories are. We hold them close and tight. I learned that it was having people around me to help deal with the flood memories that helped me the most – and an incredible surgeon who refused to have me confront such memories. He knows what they are, as he also performs surgeries at this children’s hospital. Now there are separate wards and it is more disjointed but he can only imagine what I saw growing up. He protected me. I am forever thankful to those who helped me deal with those memories and listened to me and handed me Kleenex as I cried. I hit my wall and was too tired to be so brave. I know it’s still brave to cry and confront memories which are painful but I sure like to get through hospitalizations with no tears. My tears made me stronger because I was able to say why I was afraid. This gave me control over my situation because I had the right people in place listening and being gentle with me. So…I am a fragile piece of glass that needs to be taken care of, sometimes more than others.

Links to the other posts in this series:

Time is on my side, yes it is…

Road Trip (My Life with Sacral Agenesis) 

The Beginning – Julie’s Mom’s Story 

A Day in the Life with Sacral Agenesis 

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time 

My Life After the Fall 

When You Are Feeling Down, You Need a Hug

Time Will Tell (What’s Next? Dealing with Sacral Agenesis)

When Times Get Tough-Watch a Movie:  the Power of Distraction in Chronic Pain

Growing Up with Sacral Agenesis:  What It’s Like to Have a Pediatric Problem in the World of Adult Medicine

In Chronic Pain and Playing the Waiting Game

Failure of Transition – Going from Peds to Adult Medicine with a Congenital Condition

Oh We’re Not Gonna Take It Anymore…

Raising a Twin with Sacral Agenesis – A New State of Normal

Eureka! A Surgeon is Found – (aka Julie’s Happy Blog)

Happy Birthday Jules! 38th Birthday, 48th Surgery