Alden was born Dec. 19, 2006, after a fairly normal pregnancy. He was 5 lbs 2 oz and was 17-¾ inches long. He was born on time and there were no complications. He was this perfect tiny little thing! My family and the hospital staff just marveled at how such a tiny baby could be so perfect. They thought he was premature at first because of his size, but he passed all of the first tests with flying colors, except that he had no sucking reflex. He also was born with very mild hypospadias and his third toes kind of hid behind the second toe on both feet.
Shortly after his birth he began to eat on his own. But right away we noticed that he wasn’t growing like he should be. He also didn’t seem to have the appetite that I expected with a newborn. At six weeks, the doctors said this was because of silent reflux. They prescribed medication which seemed to help for a little while.
At this appointment, the doctor cautiously told me that she would like to refer him to a geneticist. She said his growth pattern was concerning her. His head was growing normally, but his body was lagging behind. She also pointed out that his ears were a little lower than normal. She said that this and all of his other “quirky little things” could be part of a central disorder. She referred us to a geneticist, and we filled out the necessary paperwork and were informed that it would take months to get an appointment. I was very frustrated because I, too, thought that something just wasn’t right. I wanted answers.
When Alden was around 3 months old, he wasn’t eating again, so his doctor sent us to Arkansas Children’s Hospital where he was diagnosed Failure to Thrive. I soon discovered that this meant they were watching us to see how we were taking care of our little boy. This terrified me! I mentioned to the doctor there that we were trying to see a geneticist to get answers and she put in a call. The geneticist worked in the same hospital and came to see us the next day. He took one look at him and said it looked like Russell-Silver Syndrome. We, of course, had never heard of this syndrome, but we had a name and so our research began.
I spent countless hours trying to figure out what to expect and what to do next. My research didn’t turn up a lot of answers, though. It was clear, however, from reading about the symptoms that Alden definitely fit the bill. My problem now was that I didn’t find much that could be done to make him eat and grow. I took everything I read to his pediatrician. She had never heard of RSS either so she was learning right along with us.
In the months that followed, I joined this site and learned loads more than I did from my research. I had finally found real live people who were living through the same problems we were facing. It was so comforting to find people who had faced the same trials, lived through it, and were willing to help me through it.
It was very frustrating for us to go to doctor after doctor who didn’t really seem to know what to do for Alden. Many of them had never heard of RSS or had never treated any RSS children.
Alden was 8 months old and weighed only 11 pounds when we decided to have a g-tube placed. This was very scary for us, but Alden was stronger than we thought. Right away he recovered from his surgery and began to gain weight and thrive. He started meeting all of his milestones. He had always been cognitively “normal” but was behind physically due to lack of strength. With regular full feedings we were also able to control his blood sugar. He is also stronger and able to fight illness.
Now our sweet, smart little toddler is gaining weight, growing and learning new things everyday. His doctors are very pleased with how well he is doing. He is amazing us with his big person-ality. He loves life and brings so much joy to our life and to everyone he meets. We are also looking forward to trying growth hormone after his second birthday. We are hoping to see more gains in growth and strength. I know the road ahead will be long and at times hard, but Alden has the strength to get through it. He has shown us that great things really do come in the smallest packages!
Andrea – Mom to Alden