Talk:Encephalocele

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Talk:Encephalocele

[edit] My Experience as the Mother of a Child with an Encephalocele

By: Marcia Ramsey

My beautiful daughter was born on February 26, 1986 with an occipital encephalocele. This diagnosis was made during the second trimester of the pregnancy at which time we were advised to consider terminating due to the prognosis that she would likely not survive the remaining months. I was told that even if she did make it to the due date, she would probably be stillborn or die shortly after birth.

Abortion went against all of my beliefs, but with such devastating medical predictions, I made it a matter of prayer. Afer my alone-time with God, I was confident I should continue the pregnancy.

I was blessed to have two of the finest doctors in the state of South Carolina and they supported my decision whole-heartedly. The remaining months of the pregnancy went by uneventfully, although I had premature dilation and chronic false labor. I was able to work half-days until just before the scheduled delivery date.

Due to the size of my daughter's encephalocele, a normal delivery would have been catastrophic. I had a C-section in order to optimize her chances of survival. When I heard her first cry, my heart could hardly contain the joy and relief!

Dana's encephalocele was at the base of her skull and the bony defect was about the size of a half-dollar. She had surgery when she was two days old. A neurosurgeon removed the cyst and some brain tissue that had herniated into the sac; then a gifted plastic surgeon grafted skin and hair over the opening.

Within the first month of her life she developed hydrocephalus and had to have a second surgery to place a shunt into her brain to control fluid build-up. Dana was always a trooper and very resilient. She recovered quickly. In time, so did I. I thought I'd never have a moment's peace from worry over whether or not the shunt was working, but the good days did come and when they did, it was all about living, laughing and loving! I grew and matured so much during those years with her. I learned what really matters and gained a new perspective on life. It was an intense parenting experience that opened my eyes to many things.

The story of my daughter's life is now recorded in a self-published book about her called, "Elephants & Angels": The Life of a Magnificent Child. To learn more about our journey, visit my website at www.marciaramsey.com. The pictures I've posted tell the story much better than words.

My daughter lived to be 7 1/2 years old. Our journey was not an easy one, but it is one I will forever be grateful I took.

Each situation is unique and requires careful consideration based on sound medical and spiritual counsel. My prayer is that you will find, as I did, that God always answers a sincere heart-cry. He will help you make good decisions.

God bless!