I was nineteen years old and pregnant with our third child. I remember the day I found out Noel was going to be born with a birth defect so clearly; it use to make me angry. I was sitting in the waiting area to have my ultrasound and trying to drink enough liquids to make the test successful. I’m reading a magazine and I can overhear this two women talking. One says, “I remember when I had my first child I stopped drinking, smoking and everything not this time, I am going to do whatever I want to do.” I was thinking that is a crazy thing to say when you are sitting waiting to have a test administered that will reveal whether your child is healthy. I also remember thinking she is incredibly selfish to jeopardize someone else’s life and the way they will spend it. I was utterly disgusted at the conversation these two women were having so I tuned them out.
Now I am in the procedure room and the technician is taking pictures and we are laughing and conversing. I really didn’t want to know what I was having because I already had two boys and was hoping for a girl. Within minutes the sex of the baby was the least of my worries. I had never had an ultrasound like this, the baby was truly performing. The technician blurted out it was a boy before I could stop her so we sat in amazement as he appeared to be first sucking his thumb, then praying, and then he turned over. He appeared to literally stand up in the womb with me holding on to the table from the pain of his acrobatics and then silence. The technician is no longer talking to me she is taking picture after picture, and then she places what seems to be xray films in a machine, and then a video tape and I began to cry. The hot tears are streaming down my face as I lay on my back hearing no sound. Knowing that something is wrong but not what it is.
Then suddenly it seems the plastic bubble of silence that has cocooned me burst and I can hear my doctor being paged over head, and the scrambling of staff and, “She is a patient of Dr. Cummings.” The staff cannot tell me what is going on so they place me in a consultation room were there are tons of baby magazines and poster of cooing, smiling, breastfeeding babes and moms. I look at all the pictures that surround me and cry. What is wrong with my baby boy?
Soon someone enters and I am told my doctor cannot leave and I must go down to his office. So I fix my face, swallow my tears and get on the elevator only to breakdown in amidst a crowd of patients and staff. I make it to the reception area a sobbing mess and the receptionist who happens to have a physical defect gathers me in her arms and takes me to a room. She ask what is going on, ” I tell her between sobs and hiccups that my baby, there is something wrong with my baby. “Why do you say that?” I tell her what has transpired and she comforts me and tells me it will be alright.
I finally meet with the doctor who tells me my son has Menigomyelocele which is the medical term for Spina Bifida. He admits that he doesn’t know much about it but will research and meet with me in a week. I return with over 150 questions which he goes about answering. Dr. Cummings has retired now but I am so glad he was my doctor during this ordeal. His attitude and care made all the difference in the world. If it had not been for the ultrasound the preparation that took place before his birth would not have been possible.
I went through all that alone because my husband was at work but we had a lot of decisions to make. I was told I had two weeks to decide whether to abort or not. We chose not to though we were afraid and were told the worst case scenario would be that our son would never be able to be home with his family but instead institutionalized for life. We prayed and our family did as well and now Noel is a 20 year old pain in the butt. He graduated from High school and did go to a semester of college. He does have a learning disability, is in wheelchair, and has latex allergies which include some foods. He takes medication for urinary infections and incontinence. He is very physically active has participated in wheelchair basketball, fencing, bowling, and adaptive rowing. He goes and hangs out with his friends, has picked up the nasty habit of smoking and can’t wait to turn 21 so he can get wasted for his birthday.
Things aren’t picture perfect and he has endured surgeries though not as many as his peers. He has a ventricle shunt because along with Spina Bifida he has Hydrocephalus (Water Head was the old layman’s term) and this keeps water from accumulating on his brain and causing further damage. I had a planned Caesaren Section to prevent further paralysis which he has from the waist down. He has received health services since the age of six months from Kosair Charities. He has received physical, occupational and speech therapies until he was old enough to decide that he did not want to walk with braces and therefore the therapy was discontinued.
Now that he is older it is harder to make him maintain his appointments, he has problems with his memory and misplaces important papers and appointment dates. We are working on getting him better organized, to socialize more with person like him, and again active in sports. He goes through moments I believe when he is down in the dumps and just wants to sleep but overall he is a happy person. One moment he says he wants to move out and then again he doesn’t I worry about what the future holds for him not because I believe he can’t handle being on his own but because the society we live in does not value human life and the lack of respect for the elderly and disabled.
The facts:
Myelomeningocele – this is the most severe form of Spinal Bifida and occurs when both the protective covering of the spinal cord (meninges) and spinal nerves protrude through and opening in the spine. There is usually severe nerve damage and profound physical disabilities.The extent of disability in each case of Spinal Bifida differs with each patient. Paralysis is largely determined by where on the spine the opening occurs, the size of the opening, whether skin covers the affected area, and whether or not spinal nerves are involved.
How is Spina Bifida treated?
Unfortunately, because nerve tissue cannot be replaced or repaired, there is no cure for Spina Bifida. Infants with myelomeningocele usually require surgery within the first 24 hours of life to close the opening in the spine and reduce the risk of infection. These children may also need subsequent surgeries to correct deformities. In milder cases of Spina Bifida, such as meningocele, the cyst that protrudes from the spinal opening may need to be surgically removed, usually without any further complications.
Can Spina Bifida be prevented?
The exact cause of Spina Bifida is not known. However, research has proven that when a woman takes 400 micrograms of folic acid (especially before she gets pregnant), she cuts her risk of neural tube defects by as much as 70%. A healthy diet that includes foods rich in folic acid is also helpful.
http://www.faqs.org/health/Sick-V4/Spina-Bifida.html
