Story about Sacrococcygeal Teratoma , Epilepsy.

Born to Thrive

May 21, 2017

By: Erin


My medical journey started when my mother was six and a half months pregnant with me. Her pregnancy was going completely as planned, and she was due to have me on Valentine’s Day. She wasn’t due for another ultrasound for nearly a month, but called up a family friend who happened to be an ob-gyn and sonographer after getting the feeling that something wasn’t right.

[Erin Kavanagh]
Erin Kavanagh at Shriners Hospital

“I thought something was wrong because I was just larger than I had been with my first pregnancy at the same gestational period. So I went to my physician and they did blood-work and there was no indication that anything was wrong. But several weeks later I still had this feeling that something just wasn’t right, and it felt like I was carrying twins.” To put it simply, if my mother hadn’t gone in when she did, I wouldn’t be here today.

Shortly into the ultrasound it became clear that there was a large mass protruding from my back. My mother was told to go to http://www.hopkinsmedicine.org/in Baltimore, Maryland where they diagnosed me with a https://en.wikipedia.org/wiki/Sacrococcygeal_teratoma, a rare type of tumor that forms at the base of the spinal cord. Less than a month later the tumor had grown so large it triggered my mother to go into pre-term labor. I was born nearly two months early, weighing seven pounds. I weighed three pounds while the tumor weighed four.

At the time, only two hospitals in the country were willing to do my surgery, Johns Hopkins being one of them. From the very start, some of the best doctors in the U.S. were on my case, and they had never seen a tumor as large as mine. The internal part of my tumor had become highly vascularized: it had spread throughout my sacral plexus and up nearly half my spinal cord and the pressure it was exerting had dislocated one of my hips. After a biopsy, the tumor was classified as malignant, making it even more imperative that every bit of the tumor be removed.

[Erin Kavanagh]
Erin Kavanagh at Camp Canada

My ostomy was first meant as a bowel diversion while doctors attempted to remove the tumor from my pelvis and spinal cord. In two operations that lasted nearly 20 hours total, surgeons successfully removed the four-pound tumor. My heart stopped twice from loss of blood but I survived thanks to the amazing team of doctors on my case. Unfortunately, the tumor was so invasive, the surgeons were forced to remove large amounts of nerves and muscles in my lower back, leaving me with nerve damage in my colon bladder, and legs. Due to the lack of muscles and nerve control over my colon, I now have a permanent https://en.wikipedia.org/wiki/Colostomy. Since my bladder was also damaged, I had a procedure when I was seven called a https://en.wikipedia.org/wiki/Mitrofanoff_procedure Doctors made a channel out of my appendix from my bladder to my belly button and sealed off my urethra so I could catheterize this channel and have full control over my bladder.

Even though I had survived the initial surgery, my journey was far from over. There was still a very high chance that my tumor would grow back, and if it did, doctors believed the cancer would probably return as well. While my type of tumor is rare, it’s even rarer for the tumor to be malignant and thus the cancer is highly aggressive. My parents were told that if the cancer did come back, my chances of surviving past age three were very slim. Preventative chemotherapy was considered, but since I was so young it would have had detrimental effects on my already impaired development.  When I was one and a half, a MRI scan showed the original tumor had grown back, but luckily it was a benign section. The re-growth was successfully removed and I have been tumor-free since.

Read mu full story:

https://courage-to-shine.org/2016/06/15/erin-kavanagh-being-secure-sure-of-oneself-is-a-beautiful-thing/

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