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justgranny 01-18-2015 11:34 AM

grandson was born with very slanted eyes
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.


justgranny 01-18-2015 04:38 PM

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.

kanded 01-20-2015 12:10 PM

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!

justgranny 01-20-2015 07:08 PM

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.

kanded 01-21-2015 07:34 PM

Re: Concerned about my newborn Granddaughter
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.

justgranny 01-21-2015 07:43 PM

Re: Concerned about my newborn Granddaughter
Those are good suggestions. Thank you.

justgranny 01-21-2015 07:53 PM

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.

kanded 08-14-2015 06:27 PM

Re: Concerned about my newborn Granddaughter

Just checking in to see ifyou had resolved your concerns with your grandchild and to ask if everything had turned out OK for you. If so, that's great! Remember its ok to voice concerns here, that's what this forum is for.

justgranny 08-15-2015 05:29 PM

Re: Concerned about my newborn Granddaughter
Kanded, I couldn't remember how to find this message board until I found an email today.

Thank you for your concern. You helped me so much. I think my grandson will be ok. He is 7 months now and is strong and seemingly healthy. He still has some of the features and I can see why I was concerned, but pictures don't tell the whole story. He doesn't show any symptoms, thankfully.

I appreciate your taking me seriously. I needed someone to talk to. Thank you.

kanded 08-18-2015 12:44 PM

Re: grandson was born with very slanted eyes
I'm so happy for you!! We all just need a little reassurance or support sometimes... babies look so different when they are born then when they are older too. Wishing all the best for you and your grandbaby!

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