Madison Renee

O n November 11, 2008 my husband and I found out we were pregnant. We were so excited, we had already lost a baby in May from miscarriage. February 24, 2009 was the day we were going to find out if it was a girl or a boy!! A day that is suppose to be so exciting turned out to be a nightmare. After finding out we were having a little girl the sonographer told us there was a "cystlike" structure on the back of our baby's head. Our doctor referred us to a Perinatologist for a level 2 ultrasound.

We went in the next day and it was determined our baby had what is known as an Occipital Encephalocele as well as a right multicystic dysplastic kidney. We were devastated! The doctor asked if we would consider having an amniocentesis...we agreed. This was to determine if there were any chromosomal abnormalities. After about 5 days we got preliminary results that there was no sign of trisomy 13, 18, or 21. That was the best news I had heard in so long!! After about 14 days the full report came back with no chromosomal abnormalities!!

After several weeks of having ultrasounds, our perinatologist referred us to a Pediatric Neurosurgeon at Duke University Medical Center in Durham NC. That appointment would not be until May 20...those were the longest weeks of my life. I had spent so much time on the internet researching her problem only to find sad stories. When we went to Duke we met with the Pediatric Neurosurgeon, we also had another ultrasound. The doctor up there reassured us that Madison's encephalocele was extremely small in comparison to the many others he had operated on. He informed us that we would have a C-section at Duke and Madison would go to surgery soon after to repair the encephalocele.

On July 14, 2009 at 2:18pm our beautiful baby girl entered the world at 6lbs 15 oz and 19in long! She was the most beautiful baby I had ever seen! The encephalocele was a lot smaller than we had imagined it would be and it was more in the lower head, upper neck region. It was fully covered with skin as well as beautiful long, red hair.

On July 17 at 9:30am our baby girl went in for surgery. It lasted approximately 2 hours. The neurosurgeon called us in to talk with him, he gave us wonderful news. The surgery went well and Madison was doing great. We got to see her after the anesthesia wore off. She had a large bandage covering the back of her head. Other than the bandage, you would have never known anything was wrong with her. She acted like a normal 3 day old baby. Madison got to go home on July 20, only 3 days after her surgery!! That was the second happiest day of my life, the first being her birth!

On July 30 we went back to Duke for a brain CT and to have the stitches removed. On the CT scan it appeared that Madison may have been developing hydrocephalus. Also, it looked as though her head was growing a little too quickly. The doctor did not want to rush into anything so he had us go to our Pediatrician back home in Fayetteville once a week to have Madison's head measured.

We returned to Duke on August 20 for another CT scan and check up with the Neurosurgeon. After about 5 weeks of having her head measured and the new CT scan it appeared there was NO hydrocephalus. We were so happy!! We don't return to Duke again for the Neurosurgeon until November 23rd.

Right now Madison acts like a normal 3 and 1/2 month old baby!! She smiles and laughs A LOT!! Her scar has healed up nicely, you could never tell she had an occipital encephalocele. She is a happy, happy baby with a bright future ahead of her thanks to Dr. Grant and his associates at Duke University Medical Center in Durham, NC. 

I wanted to share Madison's story for those mother's who are facing what I faced. It is the scariest feeling...the unknown. Not knowing what is going to happen to your beautiful baby. Well, there is hope and you have to hold on to that and your faith as strong as you can!! Miracles happen everyday and my baby girl is proof of just that!!! Feel free to contact me with any questions you may have, or if you would like to see pictures of Madison, my email is ECUChica03@aol.com