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 I am Shannon Barrett and I am an SGA adult. In case anyone is curious, I am 4’9” and I love being small. I suppose it goes without saying that I never took growth hormones, and I had a relatively healthy childhood. I have two children, Amelia who is almost six, and Crosby who is 4.5, both diagnosed SGA by Dr. Harbison. They both suffered from Intrauterine Growth Restriction (IUGR). Amelia was born at 36 weeks weighing 3lbs 14oz and 16.5 inches long. Crosby was born at 37.5 weeks weighing 2lbs 13oz and 16 inches long. They both take growth hormone therapy and Crosby has a g-tube. My husband Matt is a wonderful father and a great support to me. I don’t know how I would do this without him!
I became acquainted with Magic in much the same way I would imagine many of you did-on the internet. When Crosby was about a year old we began to realize that he was not out growing the look of an IUGR baby the way we thought he would. Although Amelia was born small, she actually put on a decent amount of weight in her first year. Even though she always followed a curve well below the first percentile, we were not concerned and neither was her doctor. At the time she was a good eater, and since I was small we knew she would be too. I did not know at the time that I was SGA. So we started to do some research and my husband found Russell Silver Syndrome on the internet. I did some more research that evening and found the Yahoo Russell Silver group. It was there that I was welcomed so warmly and introduced to Magic. I found out that the annual convention in Chicago was coming up soon, and so I made plans to attend with Crosby, thinking that he may have RSS. Although I knew of SGA because of Magic’s information, I still did not fully understand that it was an actual growth disorder. I, like many others, assumed that it was only a descriptive term. I didn’t realize that it needed to be taken seriously.
When we met with Dr. Harbison, she diagnosed Crosby as SGA. That is when I was diagnosed as well. It all started to make sense! Through all of the information I had learned up until that time, I had concluded that Amelia was SGA, and I told her that he had an SGA sister. When she asked why I didn’t bring her too, all I could say is that we didn’t understand that it was something that needed attention. I was given a lot of information and a lot to digest in one day. I didn’t sleep a wink that night. She had said that Crosby may need a feeding tube and that really scared me. I didn’t know then that one day I would be saying I wish I'd gotten the g-tube sooner!
I returned home with lots of information and knowledge of the SGA diagnosis that had eluded me before. I now knew to take things seriously and it was a good thing because that very Thanksgiving, Amelia came down with a virus that landed her in the hospital. It is frightening to think that had I not attended the convention, and learned what to do in this situation; I might have let her weather the illness at home.
This is when things started to go downhill, so to speak. In the spring of that year both of the kids got rotavirus and they never seemed to fully bounce back from that. They practically stopped eating and their growth and weight began to lag. We managed to push through another year until we’d had enough and finally put both of the children on growth hormone. Right away I saw a change in Amelia. Within three days she was eating food like I’d never seen her eat! Crosby was a different story though. The GH helped him in all ways except for appetite. A few months after starting GH, he had a gastrostomy tube placed. By that time I was more than ready for that tube! Finally, I was able to feed both of my children.
Through all of this, as a member of MAGIC, I had access to information that helped me in so many ways. The articles, DVD’s, newsletters, networking, were all invaluable to me. We have attended every convention since that first one in 2005, and it is always an incredible experience. Because of MAGIC, I know what to do when my kids are sick, I was prepared for my son’s g-tube surgery, I can speak intelligently (at least somewhat!) to doctors regarding their care, and I have made some of the best friends I will ever have.
Now, as if all of that wasn’t enough, I actually get to work with MAGIC! I feel honored to be a part of an organization that has done so much for me and my family, and I look forward to serving YOU in any way that I can.
We also have our own Yahoo Group! Come on over and join our group. You can find us at: http://health.groups.yahoo.com/group/SGAChat/.
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