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Old 04-16-2013, 11:44 PM   #1
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granny59 HB User
Concerned about my newborn Granddaughter

She was born 4/14/13 16 days past due. I saw her for the first time when she was 11 hours old. She looks nothing like her 3 siblings, or any of her cousins. We have strong family genes and all the kids resemble each other. My first thought was she looks asian, she does have the upturned slanted eyes. I kept staring at her trying to figure out who she looked like compared to the rest of the family, but the family features are just not there. My Mother the babys Great Grandmother worked in the maternity ward at a hospital for 20 years. My Mom called me after I sent her pictures from my phone of our newest Granddaughter. She wanted to know what her PKU socres were. I didnt have that info. My Mom said I am concerned she has downs. Look at her eyes, look at the bridge of her nose. Mom said she has seen newborn downs babies and is pretty sure our new baby does. I have spent most of today reading about how to tell if your newborn has downs. They came home from the hospital this evening I was at their house when they got home. Her cry sounds hoarse and weak, like shes been crying or screaming a long time and is hoarse. I asked if she cried the whole time on the 80 minute drive home from the hospital. they said no she slept. but she was crying then and sounded hoarse and weak. Another symptom my daughter in law brought up to me was she has a really long tongue. She sticks it way out when she nurses and it looks really long? I never saw a baby with a tongue so long... I really didnt have a chance to check her out all over for the crease in her hand or the other signs that I read about today in fact they didnt even know I was going to be at their house when they got home as we have their other 3 kids at our house for a few days. I just wanted another quick look at her. I havnt said anything to them yet of mine and my Mothers concerns. I just dont know what to do. I know early education and therapy are key and shes only 2 days old. If my 72 year old Mother can spot downs symptoms Shouldnt the delivering Dr have noticed the symptoms? the shape of her eyes? and did some testing? Should I mention it to my Son? Should I wait until her first checkup and see if the pediatrician notices anything? I just dont know what to do.

 
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Old 04-17-2013, 08:25 PM   #2
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kanded HB Userkanded HB Userkanded HB Userkanded HB User
Re: Concerned about my newborn Granddaughter

The only definitive way to know is through a chromosomal karyotype test after birth. Usually the pediatrician that checks out the baby after birth at the hospital is the one to observe for any abnormalities. But if that didn't happen, the baby should have an appt already setup for a 1 week well child, which is the procedure for all newborns these days. Not to minimize your role as the grandmother, but the person who can be most supportive of your d. in law should go with her, such as her mother, because this will be a very bad time for her if anything is said about Down Syndrome. The pediatrician can order the test at this time. I wouldn't say anything until she has this visit, that way it can come from a professional. If the dr doesn't say anything, maybe you can quietly ask your son if the baby has been screened for all birth defects, and let him ask his wife without involving you. I don't know what kind of a relationship you have with your d. in law, but you should tread very carefully here. This is a very delicate subject, and you don't want to alienate her.
This all being said, the baby may not have Down Syndrome. Let's hope that she doesn't, just because it will be a rougher road for the child. But just take one thing at a time and don't assume anything. The most concerning thing at this point in time is, if it is Down Syndrome, that her heart and her organs are all checked to make sure they are structurally sound. If you notice any health concerns, those should be taken care of first.
I have a child with Down Syndrome who is now 3. When he was first born he was diagnosed with Down Syndrome, although they waited for the test to make it official. After he was diagnosed, we went to see a geneticist to have him explain to us what it was all about, and to help us to accept the diagnosis. Because it is hard to accept. It felt like a death in the family.
But, overall, while it is a hard road to go down, and a bitter pill to swallow, I have learned to think of it as a different path. Because my child has DS, that has not defined who he is as a person. He acts just like my side of the family. And while he has some features of Down Syndrome, he also looks just like my husband's side of the family. He does things just like my husband does, like he sleeps in the same position my husband sleeps. He makes cute num-num sounds when he eats just like my daughter did when she was his age. As far as mental capacity, it takes him a little longer to do stuff, but he usually does it in his own way and time. He already does some things that I've taught him, to help me around the house that most kids probably don't know how to do. He knows over 100 signs in sign language and has started to talk. At an early age he could tell me with signs what he wanted to eat, whereas other babies without DS couldn't do that.
So the Down Syndrome part itself isn't so bad, its some of the health concerns that may develop that are worrisome.
Take it one step at a time, and see what develops. I know you're worried, but in the meantime, try to enjoy your new baby granddaughter the best that you can, and give thanks if she is healthy, since there are many children that don't have DS that are not healthy.
Best wishes, K.

Last edited by kanded; 04-17-2013 at 08:33 PM. Reason: clarification

 
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