After 19 Years

After 19 years of asking, waiting, and wondering, a soft-spoken neurologist finally gave us a missing piece to the puzzle in my son's brain. For years we have heard phrases like "Dandy Walker Cyst," "This brain is a train wreck," "Institutionalize him," "Microcephaly," "Maybe it's VCFS," "Severely brain damaged," "He won't survive and if he does he will be retarded." But no one ever told us the information that has been sitting on the MRI scans done on Timothy at the age of 19 days. Yes, folks, 19 DAYS OF AGE!! HE WILL BE 20 YEARS OLD IN APRIL. We have seen at least seven other neurologists over the years, and none of them gave us the information that was sitting right there on those scans all these years!! I don't know why. Surely they recognized the severity of the hypoxia. It's just they never told us about it. "Put him in an institution" was easier than taking the time to show us what horrible shape his brain is in. No one took the almost 2 hours to sit down and explain this "new" information to us. Not until this doctor.

Ahhh, I am ahead of myself. I will back up a bit. On our never-ending quest to find Timothy more help, we decided to try the new board-certified neurologist in town. Timothy's geneticist has unsuccessfully pursued for years the possibility that Timothy has VCFS, as he has many, many symptoms of VCFS (Velo-Cardio Facial Syndrome) but doesn't test positive for it with chromosomal tests. This geneticist wanted Tim evaluated by this new neurologist, because it was being said around the town that the neurologist was giving people answers and help that they had never received before! We gathered all of his medical records and the one set of MRI scans that were done on Timothy's brain when he was 19 days old. It is the only MRI that he has ever or will ever have, because a pacemaker was implanted soon after the first MRI. People with pacemakers cannot have MRIs. The neurologist asked us loads of questions and looked at the scans. He said everyone was complicating the waters looking for a syndrome or genetic condition. He agreed that he had microcephaly and a "significant" Dandy Walker Cyst which explains a host of Timothy's learning, emotional and medical health problems. And he may very well have VCFS. However, he said the biggest issue was that he had HYPOXIC ISCHEMIC ENCEPHALOPATHY (HIE).  Basically, these really fancy words mean a severe lack of oxygen and blood to the brain and central nervous system either during pregnancy or in some cases during the first months after birth. (It can also happen after a heart attack.) He said the scans showed a severe case, and he did not know how Timothy had survived. He had only looked at scans this bad of babies who had already died when he had been called in to make the diagnosis. Now that we know what to look for in the scans, it is shocking to compare his scans to that of a normal infant's brain. Since Tim had three heart attacks after the MRI was done and during the first few months after he was born, the neurologist said that Timothy's brain probably actually looks worse than it was in the MRI. The neurologist said his brain was "screaming out" HIE!! Also, this patient, kindly neurologist said he absolutely could not understand why Timothy didn't have very severe cerebral palsy. I explained to him about all the early childhood intervention that was started when Tim was less than 2 weeks old, and he said that maybe, just maybe, that helped. One thing is for sure, Tim is a miracle!


So all this time, it may have been just a bum pregnancy or delivery that caused a host of the problems my ds lives with now. (The Dandy Walker Cyst is something different and was not caused by the pregnancy.) I experienced a very difficult pregnancy and delivery with him. I feel no guilt, though. I did everything the doctors told me to do and never ate or drank anything wrong (not even a soda), never used nail polish or hair spray or anything I thought had chemicals in it, but it just wasn't enough. I was bedridden, laying on my left side for weeks and then hospitalized for two months to try to keep the pregnancy viable. I know that he would have had significant problems even if he had only had the Dandy Walker Cyst. Many babies born with a Dandy Walker Cyst die in infancy. I feel a renewed sense of gratitude that we were blessed with this child. Doctors have told me many times that he is a miracle and that God must have a special purpose for him. We sure are happy to have him and think he has changed the course of our family several times. He even saved his little brother's life once.

Unfortunately, the doctor did not have any great advice for us. He could not figure out how he was doing as well as he is doing. Boy, have we heard that a million times! But I guess when only a very small percentage of these kids live, there isn't much research to go on. The doctor told us to keep doing what we are doing. Stimulate, stimulate, stimulate the brain through more and more experiences. Tim cannot grow anymore brain cells, but he can grow pathways between cells for the rest of his life. So that is what we will do ... that and keep praying and thanking God for all that he has done in our son's life. We are so blessed!

Blessings, Dawn