Portage, Indiana
Hi -- my name is Deborah. I'm 41 years old, and am the proud mommy of Logan (age 2), and Shane (age 4 months). Shane was diagosed with MDS 6 days after he was born. I had no special testing while I was pregnant. I knew my age would affect the test results anyway, and the outcome of the test wouldn't have any affect on whether we would continue the pregnancy.
Shane was born at 2:59 a.m. after a rather short labor (got to the hospital at 2:15 am!!). He was a pound bigger than my first child, but other than that I didn't see anything out of the ordinary about him. He just looked like a chubbier baby. I did notice that he wasn't crying as much or as loud as my first, but when I asked, the nurses just said that some baby's do more of that than others. Later I found out that both my doctor and the nurses suspected Shane might have Downs when they saw him, but couldn't say anything at that point.
Two hours later, a nurse comes into my room and says she has something to tell us about our baby and quote, "it isn't good". That statement alone has a very panicking affect on new parents!! She then proceeded to tell us that some doctors have looked at Shane, and he's showing some characteristics of Down Syndrome. That was so incredibly devastating to hear. She then proceeded to tell us different things that are possible with Downs, including severe heart problems and webbed fingers and toes! I was so upset by this point and with not knowing anything about Downs, I asked her "my baby isn't going to die, is he?". Her response to that was that the hospital pediatricin would be in later to talk to us. Luckily, the doctor came in to see us within about 45 minutes. He told us that Shane was showing some very subtle characteristics of Downs, so they were doing some testing on him. His thyroid level was off, and since that can also give some characteristics of Downs, they were looking at that possibility too. When they brought Shane to me, the first thing I did was pull his hands/feet out of the blanket to look. NO WEBBING (which I came to find out later might occur only in the most extreme cases). The nurse had seen our baby -- I don't know why she had to tell us about characteristics that our baby didn't have -- it just scared and upset us! I think a doctor should have been the one to tell us the news, so that our questions could have been answered right away. There was no health problem with Shane, and he was able to come home with us when I was discharged.
We received confirmation from the geneticist the following week that Shane definitely has MDS. She said he's extra special -- not only did he not miscarry (which I guess can happen in 50% of cases), but he's got this rare form of Downs. He has NO heart problems, and his eye and hearing tests have come back normal. He's a very healthy little boy. We have a developmental and physical therapist coming to our home each week since he was 3 weeks old, and they are very pleased with his progress.
Shane is a wonderful little boy. He's our precious gift from God, and even though we don't feel adequate, we feel that God has a purpose for us in this, and this is exactly the little one he wants us to have. I feel overwhelmed sometimes when reading about what we might experience with Downs, but we've put us and Shane in the Lord's hands, and know that he will guide us through.
Thank you for your time in reading this, and I look forward of learning more about MDS from all of you.
Two hours later, a nurse comes into my room and says she has something to tell us about our baby and quote, "it isn't good". That statement alone has a very panicking affect on new parents!! She then proceeded to tell us that some doctors have looked at Shane, and he's showing some characteristics of Down Syndrome. That was so incredibly devastating to hear. She then proceeded to tell us different things that are possible with Downs, including severe heart problems and webbed fingers and toes! I was so upset by this point and with not knowing anything about Downs, I asked her "my baby isn't going to die, is he?". Her response to that was that the hospital pediatricin would be in later to talk to us. Luckily, the doctor came in to see us within about 45 minutes. He told us that Shane was showing some very subtle characteristics of Downs, so they were doing some testing on him. His thyroid level was off, and since that can also give some characteristics of Downs, they were looking at that possibility too. When they brought Shane to me, the first thing I did was pull his hands/feet out of the blanket to look. NO WEBBING (which I came to find out later might occur only in the most extreme cases). The nurse had seen our baby -- I don't know why she had to tell us about characteristics that our baby didn't have -- it just scared and upset us! I think a doctor should have been the one to tell us the news, so that our questions could have been answered right away. There was no health problem with Shane, and he was able to come home with us when I was discharged.
We received confirmation from the geneticist the following week that Shane definitely has MDS. She said he's extra special -- not only did he not miscarry (which I guess can happen in 50% of cases), but he's got this rare form of Downs. He has NO heart problems, and his eye and hearing tests have come back normal. He's a very healthy little boy. We have a developmental and physical therapist coming to our home each week since he was 3 weeks old, and they are very pleased with his progress.
Shane is a wonderful little boy. He's our precious gift from God, and even though we don't feel adequate, we feel that God has a purpose for us in this, and this is exactly the little one he wants us to have. I feel overwhelmed sometimes when reading about what we might experience with Downs, but we've put us and Shane in the Lord's hands, and know that he will guide us through.
Thank you for your time in reading this, and I look forward of learning more about MDS from all of you.
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