Luis' Story

Diagnosis: Spina bifida meningocele and hydrocephalus

I am 22 years old, married for four years with one daughter. In January of 2001, we found out that I was six weeks pregnant. I remember coming out of the doctor's office and not waiting till I got home to call my dear husband. Instead, I borrowed their phone and called him to give him the good news. We were so happy!

I started getting my prenatal care. My doctor was kind of worried because he checked my cervix and said that it felt dilated, so he was monitoring me weekly and put me on light bed rest: no strenuous work, no sex.

Since it was my first time going to this OB/GYN, he wanted to know why my cervix was so dilated. He ordered my medical records from the hospital where I delivered my daughter three years earlier. He got them and told me that I had an incompetent cervix and that they would have to put in a cerclage. However, they did not. We heard the heartbeat and I was so happy. I would hear it everytime I went in.

On April 30, 2001, I went in to get my routine ultrasound. They told me that everything looked fine and they asked me if I wanted to know the sex of my baby. I said yes and he said "It's a boy!" I remember getting all teary eyed. I was happy because we had been praying for a baby boy because we already had a daughter. I went home and about a week later I went in for my AFP test and another routine check up.

About a week later I received the most dreaded call ever. My doctor said "I got the results from your AFP test and it came back indicating an NTD." I didn't know what that meant, so I asked him, "so what's that?" He said it could be spina bifida, where the spinal cord did not completely close or that it could be some other problem. He set up an appointment with a perinatologist in the Medical Center.

We live in Houston, Texas and we have some of the best doctors in our medical center. I went in but they where having trouble with my insurance, so I had to reschedule for the following week. Can you imagine having to wait another week? My mother's instinct told me that something was not right. I just felt it.

I went back the following week, this time I took my sister with me. My husband couldn't go with me this time. He had already gone the first time and could not get off of work again. This time they had all my insurance right. The doctor came in to the room to do a Level II ultrasound. As soon as he put the machine on, he was checking the head and told me, "Oh yeah, I can see that there is fluid in his head." He went on to scan the spine and said that he had a lesion in his lower back. I just remember going numb while tears where running down my face. At this point my sister was paying more attention to him then me.

He went on to tell me all the problems that our baby would have, such as bowel and bladder problems, paralysis, and learning disabilities. I remember leaving the office and just feeling so empty. I drove all the way home crying. I dont know how, but I still remember the song that I was listening to that day and everytime I hear it I remember.

I got home and broke down to my Mom. I called my Grandma and we prayed together. I waited for my husband to get home and broke down and told him the news. I had never seen my husband cry, except when my daughter was born. He broke down and cried then we spent time talking about it. I told him all the problems that our son would have.

I went to see my doctor a week later and he told me what our options were. I told him that we had decided to give our baby back to heaven so that he would not suffer. I love my baby boy! We named him Luis Bernardo and he is our angel. We are proud to be the parents of an angel in heaven.


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