Anyone familier with Down Syndrome newborns????

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    I was wondering if any of you have any experience with newborns with Downs Syndrome??? My niece had a baby a few days ago, she was term, and the baby was having some difficulty breathing while eating so they put her in the NICU. They also mentioned that there was a gap between her big toe and second toe on both feet that was abnormal. All the tests they have run have come back normal, and there are no other physical abnormalities. They are doing a chromosome test, but we will not know the results for another week or so. The baby is progressing well and should go home Monday. I just graduated from a LVN program and have no experience with Downs Syndrome, I did some research online about it and I did find that she has some of the symptoms, like the feet and breathing difficulties, but she does not have many of the other ones that were listed. I am just worried that the staff is down playing it a little and my niece will get blind sided by this when she takes the baby to the pedi for her 2 week checkup. The neonatologist has told her that some babies do have difficulty coordinating suck, swallow, and breathing at first and it should resolve itself as long as there are no other abnormalities. Anyone ever seen any of these things in a term newborn, and if so, what was the outcome??

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  2. 14 Comments...

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    I am not going to be very helpful because I think all that you can do at this point is wait for the chromosomes to come back. I don't necessarily think the staff is downplaying things. Sometimes babies can look a bit like they have a genetic abnormality and in fact they do not - so staff prefers not to get everyone worked up if it turns out to be nothing. Only the genetic study can confirm or deny any suspicions. It is also true that some very normal term babies have had initial difficulties with the suck/breath/swallow reflex. So for now, just love that baby and wait! Sorry I couldn't shed anymore light on the matter. SG
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    My last child when born was thought to maybe downs syndrome as he had what they thought was a simian crease.after tests came back he was perfectly normal.good luck and try not to worry.
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    It seems a bit early to say it is Down's based on what you have told us. Most Down's babies are quite obvious. Note I said most. But from what you have reported, I would be kinda surprised to hear this is a Down's baby. It may have another genetic abnormality, but I don't know that it would be Down's. Some Down's babies have short necks, like their head is hooked almost directly to the shoulders. They often have protruding tongues, abnormal hand creases, and low set ears (meaning that if you drew a line from the eye across the side of the face, the ears would be below eye level). These are all things we look at when we assess every baby. I don't know about the toe thing you described, would have to see that. The suck swallow, breath thing lots of babies have trouble with and could be a sign of being early, or just not coordinated yet. Like all kids, they mature differently. Just pray on the matter, and hopefully all will be ok. If not, the pediatrician should have plenty of info. to give the parents to help them cope with whatever "problem" the child has. It can be devastating to not have a "normal" baby, but I believe there is a reason for everything and that God doesn't give us more than we can handle. I will keep your family in my thoughts, keep us posted.
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    I saw a Down's baby and it was obvious in the short limb length and the facial characteristics.
    Trouble breathing/sucking/swalliowing can just be a transitional thing.
  7. 0
    Although babies are born knowing how to breath, suck, and swallow. Rooting and suckingare reflexes. The ability to coordinate all of these into an effective nursing pattern is learned. Some learn faster than others. This is not related to intellegence.

    There is a whole collection of physicial traits that is associated with Down's Syndrome including, but not limited to: space between big toe and other toes, webbed neck, very short little finger, large, protruding tongue, low set ears, Simian crease in the hand, cardiac anomalies. It's not uncommon for someone to have one of these characteristics and be perfectly normal. I have the unusually short little fingers. I have a friend with Simian creases. We're both relatively normal in other ways.

    Wait for the full genetic study results.
  8. 0
    Congratulations on your grand niece! It sounds like she may have just had a hard time transitioning, as far as the whole feeding thing goes. Some term kids are like that.
    As it was pointed out, Down's kids are more obvious than, "Wide toe gaps". They also have cardiac issues that would have been noticed by now.
    Take a deep breath and enjoy her.I wouldn't worry about those test right now.
  9. 0
    Please don't worry yourself sick over this. It's not all that unusual for even a term baby to have some initial difficulty with suck, swallow, breathe coordination. As for the wide spaced toes, I have those, along with a simean crease & short stubby fingers. As far as I know, I'don't have any kind of syndrome at all. The chromosomes will give you the definitive answer, but it sounds to me like I have more markers than your sweet little grand niece. Please let us know how things turn out.
  10. 0
    Quote from knockandhello
    My last child when born was thought to maybe downs syndrome as he had what they thought was a simian crease.after tests came back he was perfectly normal.good luck and try not to worry.

    My son has a simian crease as well. He is a healthy 4 year old boy. The doc said it is just a fluke and could have possibly ran in the family but I don't know anyone with it.

    ** wanted to add that he has this on both palms
  11. 0
    First of all, congrats to your family on the new arrival!

    I know how scary it is to find out something may be wrong with your baby, my son was diagnosed at birth with Down syndrome 3 years ago. If the baby does have Down syndrome, then your niece will most likely do a lot of grieving for the typical baby she had imagined welcoming to the world. One word of caution...most people really really don't want to be told, "I'm sorry." Personally, I didn't mind because *I* was sorry my son had Down syndrome, I certainly wouldn't have chosen that for him. But the majority of parents of kids with Down syndrome feel very strongly that they want to hear "Congratulations, what a beautiful baby", and they don't want sympathy cards, they want to celebrate their baby, even if the baby comes with a "little extra". Oh, and please don't send her "Welcome to Holland"--about a billion other people will, so she won't need to read it again.

    One thing that is huge in the disability community in general, and for people with Down syndrome in particular, is to use people first language. I wasn't familiar with this before the birth of my son...but it is more than semantics and political correctness, our words really do shape the way we see the world. So please be aware that it isn't a "Down syndrome" baby or even worse a "Downs baby" or the worst...a "Downs". It is a baby with Down syndrome. Down syndrome is NOT the defining characteristic of the individual. It may seem like it at first as a family comes to terms with the diagnosis, but looking at my book-loving, soccer-ball kicking, funny, curious, Blues Clues fan, it is clear that Down syndrome is a very small part of who he is.

    Secondly, while it is rare, I can think of at least 5 babies with Ds that I know personally who were not diagnosed immediately at birth. The facial features are not always evident even to professionals, and there are babies with Ds who do *not* have low tone. Also, not every baby with Ds will have cardiac problems. Some kids with Ds have no medical issues and are the healthiest kids in their families. Lukas is going to the dr. today for his 3 yr. check up for the first time in 6 months.

    If the baby does have Down syndrome, there is tons of information and support out there. The blog alwayschaos probably has the best collection of links. They are on the right side when you scroll down.

    I would highly recommend *not* reading the book Babies with Down syndrome, and can't speak well enough about the DVD Down syndrome: the first 18 months. It isn't cheap, but it is WONDERFUL, and really gives a new parent lots of hope.

    To see a beautiful montage of babies and kids with Down syndrome:

    Also, just to get a glimpse of what is possible for people with Down syndrome today, check out these beautiful pictures...people with Down syndrome are living independently, working, paying taxes, getting married, and living full and happy lives.

    Please let us know the outcome, regardless of how the chromosomes come back I hope that the baby is healthy and getting the hang of eating!

    Last edit by wannabeL&D on Aug 29, '06

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