10-29-2004, 12:32 AM
I knew something was wrong with my grandson. I can’t explain it, I just knew. To add to my suspicions, the nurses working over him in the delivery room had the look of sympathy in their eyes, already. The baby was having a little trouble breathing, and his small body looked gray and ashen. He had a large purple bruise covering most of the left side of his face “…probably from being delivered with forceps,” they said.
I left the delivery room to meet my family in the nearby waiting room. I sat down and said, “I have this feeling that something is wrong and they’re just not telling us. I don’t know what it is. I can’t quite put my finger on it, but something isn’t right.”
By early the next morning, that something had a name - Sturge-Weber Syndrome (SWS). The “bruise” on his face was, in fact, a type of birthmark known as a port wine stain (PWS). It would never go away and the PWS was very possibly on his brain, too. The doctors didn’t paint a very optimistic picture. If my grandson didn’t have seizures within the next few months, there was a chance that he didn’t have SWS. They could lighten the birthmark with laser treatments. But if the seizures started, he could suffer brain damage, and there was the possibility he might die.
As the doctors started listing all the symptoms and complications associated with SWS, my daughter, Tiffany, and I just looked at each other. We were in shock. We could hear what they were saying, but it didn’t seem possible. We were too scared to cry. Although they felt it was too soon to pronounce a positive diagnosis of SWS, the doctors wanted to videotape and photograph him, so they could teach the medical students about SWS - just in case. If SWS never manifested, they could use the material for the study of birthmarks, or hemangiomas as they called them.
As the first few months went by Glen (named after me) was thriving and so normal. Except for the purple/red birthmark, he looked and acted like any other baby his age. The doctors were beginning to think that Glen didn’t have SWS after all. They would still have to check for glaucoma, as the birthmark covered his eyelid, but everyone was sure Glen was past the danger point. Usually seizures occur before the baby is 2 months old if SWS is present, the doctors told us, and if he could make it to his first birthday seizure-free he probably didn’t have SWS.
He almost made it. At seven-months-old, Glen started having seizures. All the fear we had pushed aside came rushing back. We knew our lives would never be the same. Glen had Sturge-Weber.
Glen is now ten-years-old. Looking back, I would never have thought that SWS could be a blessing, but it is. We have met some wonderful people along the way. Don’t get me wrong, if SWS disappeared tomorrow I would be thrilled and grateful, but sometimes the darkest times in one's life can be lit with hope and love.
Then there’s Glen. What a wonderful little guy he is, so loving and full of life. But then we have been lucky. Glen has a very mild case of SWS, for a lack of a better description. His seizures are controlled with medication, he has never exhibited symptoms of glaucoma, and he can do anything most other ten-year-olds can do. He does have some learning disability, but he attends public school and is doing great.
Still, that fear never really goes away. I’ve just decided to tuck it away for now. I know SWS is usually a progressive disease. It won’t get better, but it can get worse. So we live with that. Glen has no other choice.
I left the delivery room to meet my family in the nearby waiting room. I sat down and said, “I have this feeling that something is wrong and they’re just not telling us. I don’t know what it is. I can’t quite put my finger on it, but something isn’t right.”
By early the next morning, that something had a name - Sturge-Weber Syndrome (SWS). The “bruise” on his face was, in fact, a type of birthmark known as a port wine stain (PWS). It would never go away and the PWS was very possibly on his brain, too. The doctors didn’t paint a very optimistic picture. If my grandson didn’t have seizures within the next few months, there was a chance that he didn’t have SWS. They could lighten the birthmark with laser treatments. But if the seizures started, he could suffer brain damage, and there was the possibility he might die.
As the doctors started listing all the symptoms and complications associated with SWS, my daughter, Tiffany, and I just looked at each other. We were in shock. We could hear what they were saying, but it didn’t seem possible. We were too scared to cry. Although they felt it was too soon to pronounce a positive diagnosis of SWS, the doctors wanted to videotape and photograph him, so they could teach the medical students about SWS - just in case. If SWS never manifested, they could use the material for the study of birthmarks, or hemangiomas as they called them.
As the first few months went by Glen (named after me) was thriving and so normal. Except for the purple/red birthmark, he looked and acted like any other baby his age. The doctors were beginning to think that Glen didn’t have SWS after all. They would still have to check for glaucoma, as the birthmark covered his eyelid, but everyone was sure Glen was past the danger point. Usually seizures occur before the baby is 2 months old if SWS is present, the doctors told us, and if he could make it to his first birthday seizure-free he probably didn’t have SWS.
He almost made it. At seven-months-old, Glen started having seizures. All the fear we had pushed aside came rushing back. We knew our lives would never be the same. Glen had Sturge-Weber.
Glen is now ten-years-old. Looking back, I would never have thought that SWS could be a blessing, but it is. We have met some wonderful people along the way. Don’t get me wrong, if SWS disappeared tomorrow I would be thrilled and grateful, but sometimes the darkest times in one's life can be lit with hope and love.
Then there’s Glen. What a wonderful little guy he is, so loving and full of life. But then we have been lucky. Glen has a very mild case of SWS, for a lack of a better description. His seizures are controlled with medication, he has never exhibited symptoms of glaucoma, and he can do anything most other ten-year-olds can do. He does have some learning disability, but he attends public school and is doing great.
Still, that fear never really goes away. I’ve just decided to tuck it away for now. I know SWS is usually a progressive disease. It won’t get better, but it can get worse. So we live with that. Glen has no other choice.