Input for newborn with Downs Syndrome

Sorry to hear your news! Pray for the best and get all the help you can---tutors, good physician, child advocates!!

I am not an RN yet but I do know not to rely on one test! If you have had more than one test and both have proven it to be, then get as much information as you can before birth.

Check out this site: http://www.marchofdimes.com/professionals/681_1214.asp

They have some very good info! Also go to your search engine and type in newborn Down Syndrome and you will get a slew of info!

I will keep you in prayers!! JULZ:kiss

I am a nursing student that is responding to you as a request by my instructor as I also have five children, the youngest with Down's. I, as we speak, am reminded of the devastation and overwhelming feeling that my husband and I experienced when our little Audrey was born. I didn't know until her birth, since I declined the amnio due to the risk of miscarriage. I knew that I could handle a child with Down's, but not another miscarriage. (I had one before my fourth child was conceived) I am going to be giving you an extended narrative of her/our life since birth, but I just wanted you to be expecting some (what I hope will be) useful information.

May I suggest looking for a support group also?

With a newborn with Down's some need intensive care, others don't. As you have most likely read, there can be other things wrong besides the Down's, such as heart defects. As for the eating, some eat well, others take time to catch on, just like a normal newborn :) They sometimes have a harder time because they have a lower muscle tone . Usually if they are born full term they don't have problems with apnea and such.

I hope things go well for you!

Thank you ALL for caring to take time for someone you don't even know...I will try to follow your suggestions...we see the genetic counselor tomorrow for whatever "info" she is going to give us, going over the results, etc.

JBooher--Please tell your instructor she is a dear for referring you to me...and so are you for sharing your story...any type of information is appreciated.

I have taken care of many newborns with down's syndrome. Many of them do just fine after delivery, don't require NICU care, they often can breast feed.

These children are at a higher chance of having some cardiac problems at birth, but these are usually thing that are repaired later when they are older.

One family that I worked with several years ago got past the devastation very quickly and on thier weekly date night would go to Barnes and Noble and just read books on families and children of Downs Syndrome. There are many really good books out there by parents. Check in your community for support groups. Many times someone at the hospital may know a liason who also has her own child who can be a great support.

Hang in there. These are wonderful lovable kids.

I agree with the advice offered above. Support groups are WONDERFUL resources. I wish you and your family the best. I know it's a lot to take in ......just take it one day at a time. Best to you and your family!

http://ambassadors.net/archives/issue5/features_down.htm

This is an article about the Geraldi Family.

I remember Dr Geraldi when he was still a resident. he is a pediatrician, his wife a nurse and they have 2 natural children, and they have adopted many children with down's syndrome. I am sure there is a way to contact her. She is the expert.

Barbara

As I mentioned before, I was unaware that my child would be born with DS. I had no idea of what I was in store for. The only regret that I have in not having the amnio is that I would have been better prepared for her "big moment" and could have planned a more joyous celebration. As it was, we were too shocked and devastated to truly enjoy such a blessed occassion. You have an advantage here. You can prepare yourself with knowledge and believe me, you will give birth to a truly special gift. My child is the most precious gift I've ever received! She did not have cardiac problems, she seems to be developing very well cognitively for a DS child, however, we have had a problem with hypotonia. When she was born, I chose to breastfeed her. However, she wasn't gaining weight and we finally realized she didn't have enough oral muscle tone to extract the milk herself. I was told by a friend that works for the WIC Program about a "Haberman Feeder" which was developed originally for the use by children with cleft palate. These are very expensive bottles (over $30 each) that have a special nipple that takes much less effort for the baby to drink from. ( I kept mine so they could possibly be of use to someone else if you're interested...free!) I do have a suggestion for a very good book, one that was the most valuable gift I've ever receive for a shower gift, called "Babies with Down Syndrome - A New Parent's Guide", edited by Karen Stray-Gunderson. You can purchase this book from the website: http://www.woodbinehouse.com. This publishing company has MANY helpful books for children with special needs. I would love to offer more information if you like, but right now I'm sure you're just trying to let the pill take effect. Please feel free to e-mail me with any questions you have at any time, now or in the future. May you and your husband find comfort in knowing that, all of the emotions that you are experiencing right now are normal (even the bad ones). You will reach a point when you have acceptence, and can finally enjoy your beautiful child. Children with Down Syndrome have so much to offer life. They have a pleasant disposition, they see only the good in life, and their slightest accomplishment is truly a grand event! I thank God every day for my little Audrey. She puts sunshine into the gloomiest day. I wouldn't change a thing. I wish you all the best! Here's my e-mail address: [email protected] And remember: no question is to small or too big, only unanswered if unasked.

{{{{}}}...I am so sorry to hear that you have been so shocked and devastated...But, I think this child will be so very special to you..In my experience in the abscense of other acute difficulties at birth, there are not usually feeding problems or the like, and I agree with the support system idea as well...We recently had a young mom have her second downs syndrome baby....She had a folic acid deficiency...

In time, I hope things will work out for all of you and I firmly believe God is sending this angel to a family who will love her and make her as happy as I am certain she will make you.......

Please know we are all here if and when you need us....

Ille -- Just wanted to send you well wishes. I've heard many say how wonderful children with DS are.

All the best to your family.

I'm not a mom, and don't haveany links but I just wanted to share with you that Downs babies are some of the most cheery and loveable babies I've worked with. They love attention and teasing from parents and are always ready for a cuddle. I'm sure that although you are not getting the child you expected that this little baby will be just as precious as can be.

Sending you my best wishes.

It has been a while since my last post, but I just wanted to thank you ALL so much again for the responses and well-wishes...there have been some tough days to get through, and there will be more, I am sure, but we have the support and understanding of our families and friends (though many don't know just yet--it just gets emotionally draining to explain everything again and again...)

If it sounded "odd" for us to be shocked, well, unless you've experienced it personally, only then can you know the feelings of complete disbelief, sadness, regrets, confusion, and fear all at once. There is a real grieving process here, and I think we went through all seven stages. Acceptance is where we are now, though I am not so naive as to believe there won't be setbacks. After the holiday season I think we will be at a point where we can start reading books and really researching the resources in our community. I can only pray for the best possible outcome...fear of the unknown is our worst enemy at this point.

I am sure as time goes on I will have more questions and/or need "help" from unbiased professionals here on the message board...keep up the good work--I can only hope the nurses at our hospital are as caring as you all.

:kiss Illeniccup