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Old 04-16-2013, 11:44 PM   #1
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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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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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Old 01-18-2015, 12:34 PM   #3
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Re: Concerned about my newborn Granddaughter

I am having the same experience as Granny59. I live far from my son so have only seen pictures so far. I won't be able to see the baby in person until summer.

My grandson was born with very slanted eyes. This was mentioned by my daughter in law in the beginning but not since. In pictures, the eyes looked more normal after a few days, but are squinty. However, I see other characteristics. The puffy face without defined cheeks. The white specs in his eyes (I keep hoping this is a flaw in the photos). Many of the pictures have a protruding tongue. One of his ears looks abnormal. He has a short nose. In pictures, he looks floppy, but I don't want to ask them if he feels floppy.

I can't tell if other characteristics apply. I haven't asked them to check for the single line on the hand, or the separation of the toes. I don't want to ask them if the eyes still slant or if the baby has poor muscle tone, short neck, etc.

I don't want to bring any of this up until I get to see the baby myself. Also, the baby has not seen a doctor yet, they used a midwife with an easy delivery. I expect they will see a doctor in the next month or so. Reading accounts on this forum, that is no guarantee that the doctor will raise the possibility of Downs or will order tests.

The baby appears healthy, but almost every picture I get causes me concern.

I believe I am doing the right thing by keeping my concerns to myself. Since he seems healthy, I don't know that an early diagnosis would affect his health, but bringing it up might offend or scare the new parents. I want them to bond without these concerns. Does anyone think I should say something? It seems wrong when I am so far away.

I constantly worry about this. All of my concerns might be unfounded, but it has been keeping me awake and I needed to "talk to" someone about this.

One thing I realize is that my initial distress about this has lessened. The more convinced I am of the possible problem, the more I am able to accept it. I know we will all love the baby no matter what. I worry about the new parents if this is true, but I know they already love the baby and have strongly bonded.

Thanks.

 
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Old 01-18-2015, 05:38 PM   #4
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Re: Concerned about my newborn Granddaughter

Right after I posted I received a picture from my daughter-in-law. My grandson's tongue was really protruding. She said "For some reason he's been sticking his tongue out today". My husband thought it was really cute, but it made my heart sink.

 
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Old 01-20-2015, 01:10 PM   #5
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Re: Concerned about my newborn Granddaughter

I can understand your worry, but a lot of babies look a little lopsided or alien when they come out of the womb, so I wouldn't base it on how he looks.

If he is only a few weeks old, he should be seeing a pediatrician or doctor by the time he is 1-2 weeks, this is what is usually done with all newborns. I think that if you want to do something, you can ask them in a nonchalant way when is his dr appt. I would suggest taking him sooner rather than later to the dr., because they can check for things that go undetected such as a heart murmur. Also, in our state, ALL babies are required to be given a PKU test at birth,(a screening test for spina bifida and other conditions, NOT DS)and it is highly recommended that the parents go back to their dr within a few days to have the second PKU test done. At this time, a trained pediatrician should be able to distinguish the signs of DS, and if they do see something, they can do a karyotype test which takes about 10 days to get the results. But if nothing is suspected by the dr. or the parents, then I wouldn't worry.
Having a DS child, you notice things aren't right. When they are born they can have more problems, and there is such low tone, it makes it hard for them to suck properly. Is he having any types of problems feeding? Does he appear to be lethargic?
Try not to worry and take away any joy you may have about having a grandchild. If it is DS, there will be plenty of time to worry in the future. I know that sounds stupid to say not worry, but I think you're right not to say anything at this time. As time goes by, it will become more apparent. If he is healthy, believe me, that's the most important thing, and I speak from experience. My child is 5 now, and he is a true delight. When he is not healthy, that is the time I worry.
If it is DS, the important things you need to be aware of right away:
There may be a heart defect that needs monitoring.
Physical therapy will help the low muscle tone(hypotonia).
Poor sucking or latching on to bottle/breast can lead to poor growth.
GERD or acid reflux may surface which can lead to poor growth.

A baby is just that, a baby, don't lose that time with him. Maybe make plans to visit earlier rather than later, if possible. That way you could address your concerns in person, or possibly put your fears to rest.
Best wishes with your new grandbaby!
Kanded

 
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Old 01-20-2015, 08:08 PM   #6
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Re: Concerned about my newborn Granddaughter

Thank you for giving me a place to voice my concerns. I do enjoy the experience of being a granny. I have highs and lows, worrying about him and then convincing myself that I'm over-reacting. I run down my phone battery going over the pictures, trying to prove to myself that he is ok, but it is the pictures that make me worry.

Yesterday, my son wondered aloud if the tongue protrusions are normal, so that makes me think he is a little concerned.

They used a midwife and don't seem to be in a hurry to go to a pediatrician. I have been asking them for a while when they will go to the doctor but they don't see a reason to go. The midwife is a pediatric nurse so they have confidence in her.

The baby lost a little weight and doesn't want to nurse long, but he is nursing. I don't know if that is an issue or not because most babies lose some of their birth weight at first.

Early on, I mentioned my concern to my husband but he didn't want any of it. He said he will love the baby no matter what, and did not want to discuss it further. Now it is like the conversation never occurred. I feel alone, so I am glad to be able to write down my questions.

Thanks again. I know that most people on this forum have real issues to deal with, and mine are in my imagination so far. I appreciate your understanding.

 
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Old 01-21-2015, 08:34 PM   #7
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Re: Concerned about my newborn Granddaughter

JustGranny:
Your concerns are just as valid as anyone else's here, because its important to you. Its natural to be concerned, but I don't think waiting a couple weeks more will hurt the baby, as long as he is growing well and isn't having any other apparent problems. I've seen lots of newborn babies in my work and they all usually lose a little weight in the first week, but usually recoup it in the next 2 weeks.
I would encourage them to get the PKU(phenylketonuria) test, and the Hepatitis B shot, which is typically given at birth, and if he was born at the hospital they probably did it, but if he was born at home, then they probably didn't do it, but its recommended for all babies, so you could use that as an excuse for them to go to the doctor, or even to get the second PKU which is recommended for 7-10 days after birth.
I would give it a few weeks more, and if nothing is apparent, I would mention your concerns, especially if he shows more signs of DS. Just remember you're not alone in this, if he does have DS, there are many people who have gone through this and have felt what you are feeling right now.

 
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Old 01-21-2015, 08:43 PM   #8
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Re: Concerned about my newborn Granddaughter

Those are good suggestions. Thank you.

 
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Old 01-21-2015, 08:53 PM   #9
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Re: Concerned about my newborn Granddaughter

The midwife has visited twice to check the baby and on the second visit took a blood sample, so I assume it is for the PKU screening. I will verify that. I don't know about the Hep B shot but will find out.

 
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