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This past school year my niece invited my daughter and I to her High School literature class. My niece was given the assignment to interview someone using twenty questions she had prepared in advance. She asked me if I would come and speak about what it was like to have an adult child that requires total care. I was excited to have others share in what I have experienced the last 23 years. I also wanted God to use my daughter in any way He wanted by allowing this class of teenagers to observe someone that was very different than themselves. My daughter sat in her wheelchair beside me while we both sat in front of the class. My niece and my daughter's cousin sat beside us asking the following questions. Because I thought they were great questions and I enjoyed speaking about my daughter I wanted to share this with others. (I have added more thoughts and information to most of the questions.)
1. Could you briefly tell us the medical definition of lissencephaly?
The word comes from two Greek words lissos, meaning "smooth", and enkaphalos, meaning "brain". If you look at a normal brain, the gray matter (cerebrum) has ridges and valleys in its surface. In lissencephaly, the brain's surface is almost completely smooth. The physical structure of the brain did not develop correctly during embryonic development. Researchers believe that there are two possible causes of lissencephaly. It may be caused by injury to the fetus during development or by a genetic mutation. Like other disorders, lissencephaly can occur in varying degrees, some individuals can have partial lissencephaly and only have learning disabilities, others can be severe and also be associated with other deformities. My daughter has isolated lissencephaly.
You can find information on the internet about lissencephaly describing different kinds of deformities and problems associated with lissencephaly. Many children with lissencephaly do not live beyond the age of 10 years old due to aspiration of food or fluids (choking), respiratory disease, or severe seizures. Still, several children live much longer due to their disability being less severe. In addition good medical care, family environment, school involvment and physical and occupational therapy play a huge part in a child's development and how long they live.
Each child is different with their own unique problems. Seisures are usually always a part of the child's life, some are very severe and unable to be controlled. My daughter appears alot more involved and disabled on paper. You would have a very limited knowledge of her if what you read about her was all you knew. If you had only seen my daughter with your eyes you would not have a complete picture of her either. She has a personality like anyone. And like anyone it takes time to really get to know everything about her.
2. What experience did you have with people with physical or mental handicaps prior to Sarah's birth?
I did not have any experience with any disability at all. My husband knew of an older man that rode a bicycle around his town who did not have normal intelligence.
3. How old were you and what other circumstances were happening in your life when Sarah was born?
I was 28 years old and my husband was 30 years old. We had a beautiful five year old daughter. We were looking to buy our first home.
4. What was your initial reaction to the news of Sarah's condition?
We thought we had a normal baby up until she was 4 months old. There was only one thing that I couldn't figure out about her. It was her ability to see me and watch me when I would change her. We took her to an eye doctor who said, "There is nothing wrong with her eyes. Sometimes there are other reasons the eyes don't work." That was around 2-3 months of age. Then at 4 months of age she had a seizure. We began taking her to a hospital 2 1/2 hours away to see a pediatric neurologist. We began the process of finding an anti-seizure drug to stop the seizures while having tests to find out the real cause for her to have had a seizure. We are still believing we had a normal daughter and were quite naive as to what could be wrong.
Two months later after a CT scan the neurologist told us the diagnosis of lissencephaly and explained the severity of it and the prognosis, all of which was really bad. Our daughter was 7 months of age at the time of diagnosis.
The doctor left us in the room by ourselves after he told us. My husband took it hard and had tears in his eyes right away. He said, "I wanted her to be able to have her own life, her own family." He was thinking of the big picture of her life while I bounced her on my lap and thought of what we needed to do to care for her now, to go home that day. I was only looking at the details of now, she was a beautiful baby that I loved to care for. I didn't think of the long term until later.
After we drove the 2 1/2 hours home we went to our own parents separately to tell them what was wrong with their granddaughter.
5. Was there ever a question of keeping Sarah or of her living at home?
No, she was ours and we wanted her no matter what.
6. Have you ever met with another family whose child has lissencephaly?
Yes, at the hospital. They already had a feeding tube while our child still ate by mouth. Their family was not accepting of the child while we had great family support. Every family and child is unique. My older daughter did write letters to another sibling of a child with lissencephaly.
The neurologist did not know of any group or place for us to get information about lissencephaly. He only gave us a copy of two pages from a text book that told about lissencephaly. That information said that children with lissencephaly usually died by one year of age. So we came home to wait for the unknown.
The lissencephaly network was just starting 23 years ago. The internet was not there with information to help, only books or what the medical community told you. The internet has made it possible for people who are faced with a rare disability to get information immediately and communicate with someone else who also has a child with it. Also because of the disconnection between countries lissencephaly was thought to be very rare. Currently, there are lissencephaly groups in every developed country. I believe that the technology of the CT scan and other advances that can actually find what causes mental retardation and developmental delays has brought to light many diseases that were there but had not been diagnoised. In earlier years doctors just stated that the child was mentally retarded and left it at that since the technology was not there to find out more. The internet, technology advancements and the growth of physical and occupational therapies has made a huge impact on the disability community.
