wondering if my baby has down syndrome epicanthic eye fold

[fulloflove2]

Pictures are included on second page. I am so worried right now. Ever since my baby was born she was sticking her tongue out. But when she was sleeping it wasn't out but as she got older and started eating baby food she seems to stick it out more. Its not hanging out but she sticks out and curls it up and I have always thought it was so cute until I got to wondering if she was ok. I did a google search and it stated that babies that have tongues that stick out could have downs or some other syndroms. I will love my baby no matter what but it really concerns me. I hope she is ok though. So I take her to the doctor today for a ear infection and I tell the pediatrian what is concerning me. She told me that she had already though of downs and that she had another marker too which was epicanthic fold around the eyes too. I never noticed this. I see it now but it not bad just a little bit. I asked her if I need to be concerned and she said not right now because she was doing well and had great muscle tone. She said she will usually send a baby for test around 9 to 12 months if it seems like the baby hadn't grown into its tongue. She said some babies just like to stick out their tongues. When I was pregnant I had major test done to check for downs at 12 weeks. They did blood test of me and ultrasounds to test for downs and they came back negative. This is a test that is new that just came out in 2012. They told me it was 99 percent accurate. I told the dr this and she said we would just keep an eye on it. She said she had already looked for other markers on my daughter and didn't see anything else. I asked her why she hadn't told me and she told me she didn't want to worry me for nothing that she was just keeping an eye on it. I am so worried and stressed and cried all day today. I know she doesn't have a heart defect that comes with ds because her heart was checked in hospital when she was born 6 weeks early. She doesn't look like she has downs but the dr said their r some cases where they don't look it. Have any of you had a baby that had epicanthic fold and was ok?

 

[Cattia]

Hi there, I am sorry to hear that you are so worried. I remember there being a thread on here about those eye folds when my DD1 was little and there were a number of parents whose children had them and did not have anything wrong. As for the tongue sticking out thing, babies do this. My DD2 does it ALL the time and both my other two did as well, I remember having a conversation with my friend about how cute it was when DD1 was small and her DD who was the same age was doing it all the time too.
The test you had (if it's the one I'm thinking of, I had the NIFTY which is the same as the Harmony) is incredibly accurate and I would think is it highly, highly highly unlikely that your LO has downs if you had that test come back negative.

 

[pinkpolkadot]

Hello, sorry you are worrying My baby has these folds and I know a lot of babies who stick out their tongues a lot! Nobody has mentioned it may be an issue and she seems to be developing completely normally. I have read it is pretty common for babies to have the folds and then grow out of them when the bridge of their nose develops.

 

[Cattia]

Hello, sorry you are worrying My baby has these folds and I know a lot of babies who stick out their tongues a lot! Nobody has mentioned it may be an issue and she seems to be developing completely normally. I have read it is pretty common for babies to have the folds and then grow out of them when the bridge of their nose develops.

My DD1 didn't have the folds but she did also have a very flat wide nose bridge and I do remember worrying about this when she was younger. She is 5 now and has grown into her nose, and she definitely doesn't have DS.

 

[_Meep_]

Have you checked your LO's palms? Babies with DS often have just a single line across the palm, sometimes known as a 'simian crease', although this can be seen in genetically typical people too sometimes. Not all DS babies have it either, but it can be a marker. Google it, then check. Your paediatrician sounds unhelpfully vague to me! I thought DS (unless mosaic) was always obvious at birth? As a PP said, it's incredibly unlikely if you had tests.

 

[fulloflove2]

Hi there, I am sorry to hear that you are so worried. I remember there being a thread on here about those eye folds when my DD1 was little and there were a number of parents whose children had them and did not have anything wrong. As for the tongue sticking out thing, babies do this. My DD2 does it ALL the time and both my other two did as well, I remember having a conversation with my friend about how cute it was when DD1 was small and her DD who was the same age was doing it all the time too.
The test you had (if it's the one I'm thinking of, I had the NIFTY which is the same as the Harmony) is incredibly accurate and I would think is it highly, highly highly unlikely that your LO has downs if you had that test come back negative.

Thank you Cattia. Yes it was the NIFT test and they say its 99% correct. I called today and asked them if it said negative how accurate was that and the genetic councelor said 99%. My doctor has really scared me and when I talked to the nurse today she said that normal babies don't have epicanthic folds but I read on the internet they can have them. The genetic councelor also told me just because my baby girl had to signs doesn't mean she has downs. Its just really scary. Thank you for replying.

 

[fulloflove2]

Hello, sorry you are worrying My baby has these folds and I know a lot of babies who stick out their tongues a lot! Nobody has mentioned it may be an issue and she seems to be developing completely normally. I have read it is pretty common for babies to have the folds and then grow out of them when the bridge of their nose develops.

Thank you for replying pinkpolkadot. That makes me feel so much better. When you google it you read scary things. I guess I need to stop googling. I did read though that some babies tend to grow out of them when the bridge develops.

 

[fulloflove2]

Have you checked your LO's palms? Babies with DS often have just a single line across the palm, sometimes known as a 'simian crease', although this can be seen in genetically typical people too sometimes. Not all DS babies have it either, but it can be a marker. Google it, then check. Your paediatrician sounds unhelpfully vague to me! I thought DS (unless mosaic) was always obvious at birth? As a PP said, it's incredibly unlikely if you had tests.

Thanks for replying. Yes doctor has checked for simian crease and she doesn't have that.

 

[Googiepie]

My daughter sticks her tongue out all the time. So did my first. I'm sorry you are worrying. Your doctor isn't making it any less worrisome. Google is SO scary. I google things all the time when it comes to my little ones and I constantly am diagnosing them with something even though they are perfectly healthy. I don't have much experience or advice in this but just wanted to give you hugs

 

[_Meep_]

fulloflove, I don't think your baby has DS. Do you have any Asian heritage?

 

[fulloflove2]

fulloflove, I don't think your baby has DS. Do you have any Asian heritage?

Thank you for responding, no I am mostly irish. Some English maybe and little bit of indian. My hubs is the same. No Asian at all. I have had 4 other children and none of them have this.

 

[fulloflove2]

If I posted pictures could yall tell me what you thought?

 

[_Meep_]

Of course, go ahead.

 

[_Meep_]

Just wanted to add, I remembered something I read ages ago when I was a little concerned about my baby's eyes looking squinty ...

https://en.m.wikipedia.org/wiki/Pseudostrabismus

There is a small mention of epicanthic folds on this page and how they can just go away as a baby grows up. The bit about telecanthus I think refers more to older children/adults with definite problems - to me, it sounds like this is something that can be relatively common in babies.

I definitely know at least two babies with a pseudostrabismus effect to their eyes. Definitely. And I guess that must mean they have the folds too. Just a thought.

 

[fulloflove2]

 

[fulloflove2]

 

[_Meep_]

What do I think?

Personally I think she's utterly beautiful.

I also think she looks absolutely normal. I wouldn't have noticed a single strange thing about her eyes if you hadn't said anything - and I'm a proofreader so I notice lots of tiny details all the time. I don't think there seems to be anything strongly out of the ordinary about them at all. If you look at the eyes of a person with DS, the folds are MUCH more pronounced and obvious than this.

Honestly, I think she's just been born with a slightly wider/flatter nose bridge and maybe marginally larger features than the average and she will grow into them. My LO has a smaller than average lower jaw (we were told this after visiting a paediatrician for breastfeeding problems, which eventually resolved themselves). This too can be a sign of certain problems but it hasn't caused her any trouble and she seems to be developing perfectly normally.

It's so so so unlikely your baby has DS. Please don't worry.

 

[fulloflove2]

Thank you so much That makes me feel much better.

 

[pinkpolkadot]

Aw she is gorgeous! The corners of her eyes look very much like my DDs eyes.

 

[kmumtobe]

Hi, I don't know where you are but my little girl was high risk for Down syndrome when I was pregnant and we never found out either way.. I was offered a blood test for her when she was born and told she could have it any time if I was worried. I'd try a different doctor if it's something that's going to keep playing on your mind. Tbh I think it's very unprofessional and mean for you to be told she has markers then just leave you when a simple blood test could make the worry go. For what it's worth tho I think it's extremely unlikely from your pregnancy screening and she doesn't at all look like she has it, to me at least.