well first of all let me introduce myself... my name is Karen 32, partner to josh 24, mum to fin 2 1/2 and expecting bub no#2 Edd 1 Jan 07 (although i think Xmas is more likely) i hope this forum will help me get in touch with people in the same situation.

i am now 18 weeks pregnant, when i was 13wks we went to have the nucal scan not expecting anything wrong when the Dr told us there was a thickening at the back of the neck and an omphalocele on the abdomen so was advised to have a cvs. 2 days later the inital results confirmed ds then the week later it was official. when i first found out the results i cried yet i was always of the opinion that it didn't matter, and it is still the only time i cried. it wasn't news i was expecting but i could live with it. then i started to find out potential health problems and that is what scares me the most. my GP in a sutble yet not so subtle way is still suggesting termination even though i told her that it is not an option at this stage, next week i have a more detailed scan to see if there are any obvious abnormalities and i guess we just have to wait and see where we go from there.

anyway to cut a long story short (well shorter) i was hoping to get some feedback from parents. i know i am allowed to be scared but i don't know what to expect. more than anything at the moment we are hoping for a good result at the scan next week. are there any other parents out there who found out about the ds prenatal, how did you cope with the news.

PS IT'S A BOY yay

congratulations on the upcoming birth of your baby boy!! I dont have much advice to give. We didnt know Mayson had DS until she was born. We have to older children as well and Mayson is the love our lives!!!
Hang in there......he will be a blessing to your family!!

Congratulations on your pregnancy! We did not know that Cameron has DS until after his birth. He is a healthy, happy baby and a joy to our lives. I wouldn't change any part of him.

Hi Karen,
Welcome to downsyn. You have definitely come to the right place to find answers, support, help, and especially hope!!!
I am Barbie, Mom to Emeline who has DS. Em is almost 10 months old.
Our experience was similar to yours in that our very first ultrasound showed a thickened nuchal, so we were sent to U of Iowa Hospital for a Level 2 US, where the thickening had increased in 2 weeks, so the specialists were about positive it was DS, but encouraged us to have an amnio just to be sure. Termination was not an option we would have considered for us, but we did the amnio and did get the definite confirmation of T21. I know some, like us, found out before the birth, and many others learned of the DS after the birth. For me, it was good to find out when we did. It gave me time to accept that the child I was carrying was not the child I had pictured, but no less the child that God had chosen for Bill and me to have, in HIS wisdom. It gave me time to read and learn (and this site is THE BEST place for both of those things!! SOOO much stuff out there is outdated, written in "medical-ese" and NOTHING was as helpful to me as the true to life experiences and first-hand knowledge I found here at downsyn.) There are so many feelings...fear of all the "what if's", possibilities of additional complications, feelings of inadequacy, but believe me when I say that IN SPITE OF ALL THOSE FEARS, we survived. We found the strength, the grace, and the faith to trust that all would work together for good, and it has. Our Emeline has changed our world in more positive ways than either of us could ever have imagined. There were many tears, many times of overwhelming sadness in those days and weeks that I carried her, knowing that she would have DS, but IN SPITE OF THOSE, there was also the joy and the excitement of a new life soon to join our family. Once we learned of the DS, our biggest concern was the possible health challenges she might have. We have been blessed in that Em has been the picture of health so far. We know we are fortunate that all of our fears of additional health concerns were unfounded (at least so far!)
I don't know if this really answered your questions or not. How did we cope with the news? For us, we pretty much went through the stages of grief. We experienced denial ("the amnio is wrong"), sadness ("what kind of life will this child have?"), anger ("what did WE do to deserve this?"), and acceptance ("this is the way it is"). Mercifully, we have learned that it does not have to end with just "acceptance." We have learned in our short 10 month experience that happiness and joy are not forever gone to us. I think perhaps that opposite is true. Since we have had Emeline, we have learned to appreciate life a little more, to notice and relish in things that perhaps others would never notice, to rejoice in small victories, to laugh and smile and hug and kiss more, and to celebrate life. It is a beautiful gift, a treasure. And it saddens me that it took DS to teach us these lessons.

Hello Karen congratulations & welcome. We did not know before Kait was born that she had Down Syndrome. She is an absolute delight and a wonderful baby. Kait had a heart defect at birth that has since been corrected and has had no further illness other than my other kids. You are in a good place here and will get great mommy advice. Feel free to ask anything.

Congratulations and welcome to the site. I found out about Avery two weeks after birth. There are many moms that knew prenatally and I think you will get the response you are looking for. Let me assure you that not all of our children have serious health concerns. Avery has never spent one day in NICU or had any type of surgery. She is probably the healthiest one in the house. She fights off colds and viruses like you would not believe. But most of all, she is just a tremendous light in my life. She is my little miracle and I cannot put anything passed her. She is amazing and I can't thank her enough for changing my life in such a wonderful way! let us know when you get the results. I will be sending positive thoughts your way. Hang in there. And most of all, let yourself feel however you want to feel. There is nothing wrong with any of your emotions. We have all been through the wringer when it comes to our feelings!

thanks for the welcome

i will admit when i first found out i was sad but it didn't last. i know there will probably be more tears but the DS, although i wouldn't ask for it, is not a big concern. i don't know if i am saying that because i haven't really accepted it but i am excited that I'm having a baby, especially now that i can feel him moving around it makes it that more real. i know i have a different road to travel then i did with my daughter but its all part of the journey and i look forward to meeting my little boy, who at this stage we have named Oscar.

now all i have to do is wait till the scan next week where knock on wood all is OK.

i hope to get to know as many of you as i can and hopefully share in your journeys as well.

Hi Karen and Oscar

Welcome to the downsyn family.

No pre-diagnosis here......I hope and pray all goes well with your next scan.

Hi Karen. Welcome to downsyn!! Although we didn't have a confirmed diagnosis of DS before Talitha was born, it was suspected as they picked up her heart defect (AVSD) in ultrasounds. They made the idea of DS and a heart defect sound as if she would never have a decent life and put pressure on us to consider termination. I would never have done that anyway and she has had her AVSD repaired and is a beautiful, wonderful kid. None of us chose for our kids to have DS but it is not as bad as the doctors and geneticists make out.

Talitha is a wonderful blessing and we all love her so much. Your little man will be a blessing too. Keep in touch. We would love to hear how you and Oscar are progressing and to share in your joy when he comes into the world.

Welcome and Congratulations! You've definitely come to the right place. I have a 15 month old daughter named Karli. We didn't know about her DS until after birth. She had AV Canal repair surgery last August and is doing great aside from some other minor issues. It is scary when you first find out and are reading about all of the possible health issues, but they are just that....possible issues, not guaranteed. Plus, you'll have a baby who will be more like other babies than not. That was what I put in my mind and focused on and it helped me. There is an incredible wealth of knowledge and support here, so ask away and there's always someone to help. I'll be praying that your pregnancy goes smoothly. I can't wait to meet your little guy!

Congratulations on your baby boy! I too am pregnant with a boy, but it's my daughter that brings me to this forum. Darah is 2 (in 9 days!!) and while we didn't do CVS or an amnio, they were quite certain she was going to have Ds based on tons of markers and the heart defect she was found with. It was really hard for me during my pregnancy, because since we didn't have anything concrete, I still had a lot of hope that she wasn't going to have Ds. While pregnant I was more scared of Ds than the heart problem, because I figured they could fix the heart. As soon as she was born and I saw her, I flip-flopped....Ds didn't matter at all and I just wanted her to be healthy. While I never wanted to change Darah, after she was born I did grow sick of hearing about "healthy normal" babies being born. I struggled a lot with the "why me" questions. I can tell you that I am so thankful to God for giving Darah to me. I truly am the luckiest mom in the world!! Darah is doing a lot of great things and is so stinking smart it scares me!! She also has a temper like none other which she gets from me, but also from that extra chromosome. Beware...your son is going to have ample amounts of stubborness in him...something I've grown to love about Darah!!
You can see her webpage at http://darahfaith.tripod.com

Knowing your diagnosis gives you time to "grieve" the baby you're not having and research and get ready for the awesome baby you are having. There's a wealth of information out there, and this forum is the best place to start! Ask away and read other posts. And remember...while there are a lot of similarities in our kids, they are still so unique and different from eachother. Your son is still going to look like his family and have traits unique to your family.

Well i did not know that our wee Abbey had ds till the day she was born.
Im not sure if there is any fantastic time to be told..either way its not what we all imagine..
We (my hubby and two other children) are truly blessed, Abbey is extremely healthy, we are lucky , she has no heart problems and we have treated her just like my other two..

I hope the rest of your pregnancy is trouble free, and wish you well ..

Karen, congratulations on your pregancy! I didn't have a prenatal diagnosis but like the others who have posted, I think you will find this forum to be very beneficial to your well-being! Good Luck with the rest of your pregnancy and keep us posted.

Congrats on your baby boy. I did not know Sadie had ds before she was born although they saw something in her heart that made my chances of having a baby with ds go from 1/ 567 to 1/100. A 1% chance. So, needless to say, we felt like the odds were with us. I have to admit, I knew all along, but choose not to acknowledge or think about it. I know lots of moms who have known prenatally- and they are thankful. I guess it varies with each person. Anyway, I was scared out of my witts when Sadie was born- how could I care for her and make sure she had the best opportunities available? It is a lot of responsibility! Sadie's two now and the best thing that ever happened to our family. Yes all the Dr. appointments are hard, therapy takes a lot of time, we have more sickness and illnesses we have to worry about- but the good or terrific totally outweigh all of that. She brings happiness, joy, laughter, amazement, entertainment and so much more to our family. I wouldn't change her for anything. Ds is not who she is, but is part of who she is and I wouldn't have her any other way! She is a light to our family. Good luck and remember... it takes time to fall in love- but it is worth it!!!

Congrats on the news of your up coming bundle of joy. Boys are so cute. We wanted another boy so bad and no luck it another girl. Anyway welcome to the site and I didnt find out Alexis had DS until she was born. I would have given anything to have found out before I had her because I wouldnt have wasted that first two months crying and being depressed. Alexis is such a joy and If I knew before nothing would have changed because she was our baby, she had a heart beat and moved. The down fall with us knowing after her birth is the not knowing what to do and the health problems that I wasnt aware of and didnt know about. That was so hard because I wasnt perpared at all and I would have loved to found this site and info before I had Alexis so I would have learned what angels we have and how lucky we are and the big thing is that it isnt such a bad thing. Alexis could go to college, get a job, get married and all that was never thought that a person with DS could do and I hope she does. Alexis has made our family look at life and people so much different. She made us see people for who they are the inside. She teaches me so much everyday and I thank god for her and for letting me have her. So you are so lucky to be able to get info before you have him and learn how wonderful DS really is before he gets here. You are so blessed! Congrats again
Oh by the way what are you nameing him??????

Hi welcome to Downsyn. I refused amino to confirm Dominic had DS, but the 2 in 1 AFP test sort of confirmed it in my mind and the doctors. We had numerous scans after to look for other markers but only his sandal gap showed up. We were just relieved that he looked in good physical shape and just decided we'd deal with whatever came with him.
Well he did have 2 teeny,tiny holes in his heart, which may have closed up now, has he shows no signs of heart problems, but he won't lie still for the echocardiogram at last visit, he's a bouncing human dynamo lol.
We knew he was a boy and just could'nt wait for him to come, then I was scared in case something happened to him.
When he was born, some of the emotions and scary feelings most of the parents here have experienced did hit me, but in varing degrees and for me did'nt last very long, mainly fears that I'd been selfish and done the wrong thing for him by having him, but that did'nt last more than a day or so, cause I already loved him so much. But my DH took some time to come to terms with it and bond with Dominic.
Now I know I was'nt selfish, he deserves his time on earth, he amazes us and rocks our world. I don't have the words to explain how wonderful he is and what he means to us, but it is mirrored in everything the other parents have said and more. Welcome to our world. Love the name Oscar.

Welcome and Congratulations on your son! I didnt find out until after my idnetical twin boys were born that they both had DS. I was completly unexpected as I had all the Level II's done and blood tests run and everything came back negative, so I was pretty shocked. But I couldnt imagine my life without them now, they are my precious little peanuts. They are 9 months old now and life couldnt be better!

Let us know the results of your next scan. And hang in there, you've found the best support group online!!

Dear Karen,

First of all, congratulations on your upcoming baby boy! I want you to know that I understand what you are going through. We did get a prenatal diagnosis of Ds. Anthony (AJ) is only a month old, so this is all still pretty fresh for me. I thought it was really hard to get a diagnosis without a sweet baby to hold. But as we worked through our feelings, we all agreed it was in the baby's best interest for us to become informed and work through these feelings as best we could before the baby came.

I was also very worried about health problems. AJ's heart rate was very erratic prenatally, which landed me in the hospital a few times for continued monitoring. I was very afraid he would have substantial heart difficulties. But instead, we got an extremely healthy, beautiful boy!! He's not having any troubles!! He is extremely sweet and is such a good natured boy. It makes it so fun to have him around.

I think what helped me a great deal was concentrating on the type of mother I wanted to be for this baby. Did I want to be a mother who concentrated on her baby's shortcomings? Absolutely not!! I want to be this child's strongest advocate!! I promise him every day to do my best to give him a great life!!

We love all of our children, but there is a special bond between a mother and a child with special needs. I'm exploring the depths of that bond, and it feels very good!

Welcome to the Downsyn family. You've found a great place for support and friendship!

Ibby

Hi there and congratulations!

If you check out Percy's website you can find out all about her and how we found out about the DS and a heart defect (in the opposite order!) at 19 - 22 weeks! Needless to say we made our decision very quickly and no scaremongering about other health issues or anything else that "might or might not" happen were going to stop us!

The thing to remember is that DS doesnt define your child! It's just a part of them!

thank you for all your stories and welcome

i just seem to be a bit lost at the moment, mainly because i find out about the DS at 13wks and am then told there is nothing more they can tell me until my 19wk scan. the funny thing is that they would have most likly have found out at the 19 wk scan because of the omphalocele if no other reason and atlest then they would have been able to do the scan and tell us then if there are any obvious problems.

it just seems that im left in limbo for 6wks with nothing. there are so many things that could happen its hard to know how much grieving we need to do. we could be lucky and there may be no apparent problems on the other hand, well im not ready to go there yet. 6wks is an eternity when waiting for what could be good/bad we dont know. my GP is a scaremonger whish hasnt helped she seems sure i wont go to term (i have decided to change gp's) and even offered to have my records transfered over to a different hospital as the one i go to does not do terminations even though i told her that its not a concideration. tey cant even tell me if the omphalocele puts oscar more at risk or the fact i have gestational diabetes so im just out there hanging and waiting., funny thing is though DS babies tend to be small and diabetes babies tend to be big so i have a good chance of a very average size baby hehe.

i am so glad i found this site and i really appreciate all the words of encouragement and your own personal stories it has helped me beyond my expectations... thankyou

Congratulations on expecting boy number two! Any name ideas yet?

My two sons are 22 months apart and it has been a joy to watch them grow up together. Aidan is just crazy in love with his little "Seanie".

I hope your u/s next week goes well and gives you less to worry about, but worrying is what we mothers do best, isn't it?

Welcome! I'm so glad you found this forum, it's a great place for information and support. My son and his wife did not know Olivia had Down syndrome until after she was born. They were lucky that the doctor who delivered her has a nephew with DS. He said his nephew was doing great, he was four at the time of Olivia's birth. The doctor was very positive and upbeat! Olivia was born with some heart related issues, but they seem to be resolving themselves without any surgery. Olivia is such a joy to our family!

I can't add to all that has been said. . . just wanted to welcome and congratulate you. You will get through whatever you comes your way with your son and will be amazed by what this little one brings into your lives.

Our son, Wil, is 16 months - was 2 mo. premature - and had open heart surgery at 5 months. Those first 5 months were tough to be sure but we got through it like so many others do and we are all stronger and more bonded for it.

Hi Karen and welcome!!! My name is Laura and I am mom to 3 beautiful children!!! My middle child, Hayden, was born with DS. He is now 3 years old. We went in for a routine ultrasound at 21 weeks and were told that his nuchal fold was 3 to 4 times the size it was suppose to be. We opted for an ammnio and 5 days later , the DS was confirmed. I know the feelings you are going through. It is scary and the uncertainty is hard. The only advice I can really give you is try to enjoy this pregnancy. Easier said than done, I know. However, we were told that Hayden would never survive the pregnancy and we should probably terminate. We decided that only God had the answers and we would place Hayden's life in his hands. I had ultrasounds every 2 weeks to check for a heartbeat and determine if the nuchal fold had thickened anymore. The nuchal fold was so large that it was pushing his brain up and they told us he would not have normal brain development and would be severly retarded if he survived. We read everything we could find and tried to be as informed as we could. I never enjoyed my pregnancy because I waqs so worried with the "what ifs". That is my biggest regret. Hayden was born at 36 weeks at a healthy 6 pounds and 13 ounces. He is our true miracle. When he was born, the nuchal fold was a little thick but most of the excess fluid in his head had just reabsorbed itself. Today he is a 3 year old bundle of energy. He runs, walks, talks, and is such a joy to have. Please feel free to PM me anytime with questions or if you just feel like you need someone to talk to. Hang in there and Congratulations on your pregnancy!!!

Welcome Karen! I'm really glad you are here. We did not get a prenatal diagnosis, but I think the news is hard whenever you hear it. The day we found out, I thought my heart had been shattered. I held Lucas and sobbed for what seemed like forever. When we took him home, we began to look up Down syndrome on the internet and I looked it up in my nursing books. The things I read were so devastating, I would cry uncontrollably when I read them. I was so afraid for his future. Lucas has been very healthy. All the terrible things did not come to pass. Will they someday? Maybe, but I am not worried any more (most of the time!). I was driving down the street the other day, smiling and I thought to myself, "you know what? I am really happy!". Lucas fills my heart with so much love, it feels like I could burst. His smiles are the best! He melts into my arms. He is so much a typical baby. I know there will be challenges ahead, but I have learned to take things one day at a time. Today, life is good. And for that I am grateful. When I stopped trying to live in the future, let go of the "what ifs" I started being a lot happier. Not easy when you are a control-freak, but I'm learning! If you ever need someone to listen, we are all here for you.

Welcome to the site! so glad you found us! Congratulations on the upcoming birth of your baby boy! I am currently 18 weeks pregnant with baby #3 edd is also 1-1-07. I won't be able to go to term for the simple fact that this will be my 3rd c-section. My daughter Natalie brought me into this world. I feel like the day we found out about her having ds was the day I was born again into this world with a whole new set of eyes. Natalie is 3 and we were not told of her ds until after birth although 3 doctors knew about it prenatally. My ob's excuse for not telling me was fear of how I'd react and with me having so many issues she didn't want me to spend 6 months worrying. While I still have angry fears towards her for that as I feel we were not given the opportunity to learn about our daughter prior to her birth. I knew something was up when everyone kept asking about genetic issues in family with "short" bones or "short" people. I knew in my heart that soemthing ws up but part of me was too affraid to ask. Your baby boy is going to be a blessing just like all babies, and children are. Yes, he'll probably do things a bit slower but not all kids do things at the same time. Yes, there are all sorts of other health concerns but just think of today, and when tomorrow becomes today do it again. Down the road isn't here yet!

Welcome welcome! I also had no real clue about my son Ryan. We did an ultra sound at about 22 weeks with him and the tech never said anything. He made a note in his "personal notes" section and never told my OB. So when the day came so did one of the best surprises of my life. Ryan. He was an emergency c-section because he was breach and then he had just a few breathing problems. They were able to fix all in 6 days of the NICU. It was not a bad experience. But one I will never forget. Grieving is natural but you will find life with you baby more like a party. I think others can correct me. But celebrating everything they do, every accomplishment, word, crawl, step everything will bring you suck joy. I am expecting also, they wanted me to do the whole testing junk on this baby so I would have the option of abortion if it was a repeat situation. I told them they were NUTS only worse, that I would do it all over again given the chance. Good luck Karen and Welcome again!

Amanda
mom to Alissa (3) and Ryan 21 months (ds)

Karen, Josh and family welcome to Down syn and congrats on your new baby boy. We will send prayers that the remainder of your pregnancy goes well. There are many families on Down-syn who learned of their baby's Ds before birth - so I know they will share with you. My son just turned one and is doing great!

Welcome to Downsyn! Unlike others here I did not find out about the DS until after Anthony was born. Personally I thank God for this because it would have been very difficult to make any decession while pregnant. I had a level two ultrasound done (due to my age) at 21 weeks. Nothing ever showed up in ultrasounds or quad screens. If we had chose to have an Amino I would have been at least 25/26 weeks pregnant before having a conformation of DS. Anthony was born only 11 weeks later.

This is time to prepare yourself for what is to come. But don't be hard on yourself. Take time for you and pamper yourself while you have time. Start asking questions and many here can answer them correctly for your. There are many places on the Internet that will give you out dated info so I am glad you found us.

We found out about DS during the first ultrasound also. We also went through all the stages of grief,disbelief acceptance. The only thing I can with experience is stop reading so much about the health issues of DS on the Internet, it only caused me fear for nothing. Your child will not have all the issues. After all they will be kids first.

Welcome!! Glad to have you and Congratulations on your pregnancy.

We too found out prenatally. At first, I was very sad, I mourned the child that I thought I was going to have. Josie was born almost two years ago now and has not had any problems. She did have a couple of small heart issues at birth and we remained in the NICU for 10 days. She came home and has had one cardio visit and goes back for another follow-up at 2 years old. The issues with her heart have healed on their own without surgery or medication.

If I can give you any piece of advice, it would be not to worry about stuff until there is something to worry about. I realize that is easier said than done. Your mission at this point is to enjoy the rest of your pregnancy and get that baby here safe and sound, then there will be plenty of time to worry. Remember just to take one day at a time.

You will find that our children are much more like any other children than they are different.

welcome! and congrats.. i dont have any pre-diagnosis experience, but im sure you will find lots of people that can help you over here.

hi karen and josh,
welcome to the site and we hope you find all the feedbacks helpful. my name is nicola (25) and my husband is called darren (33). we have a boy aged 20 months called owen and a baby girl called kacie aged 3 months who has DS. we didnt find out that kacie had DS until she was born. when she was born the first thing we thought of was the health problems she might acure and how hearth breaking this could be. Kaice is a pilla of health, we had more problems with owen has he had alot of chest problems. Kacie is the highlight of our live and if someone said to me i will take the DS away i would say no thank you. enjoy your pregnancy dont worry and if you ever need a chat i am always here. like every body says specail children are given to special people......

Welcome Karen, & Congratulations! I am sure this little baby is going to bring so much joy to your lives.

We found out that my son had DS after he was born. I have often wished I had learned the news prenatally so that I would have been able to shed those tears long before my son was born. I wish that I would have spent those first few days & months celebrating the birth of my baby boy, not greiving over the boy I thought would never be.

I hope that, when January comes around, you have learned all you want to about DS, have shed most of your tears, and are able to truly enjoy your babies first days.

Just to ease your mind a little, my son was born with no major heart problems, and has only had a few respiratory infections since he was born (he's 4 now). Adam is an amazing little boy, who will be starting kindergarten in 2 weeks. He is starting to read, knows his ABCs, and can do pretty much anything other 4 year olds can do. He is a true blessing, just as your little one will be.

Congratulations! and welcome to the site! We did not know for sure that Owen had ds until he was a week old. But we did have an us that had plenty of markers for it. We chose not to have an amnio done. At the time, I remember being scared to death, more about the baby having T13 or T18 than ds. I knew I just wanted to have my baby. At first I spent way to much time reading on the internet about all the possiblities -- and it scared me more. So, pretty much I turned off the computer and just enjoyed my pregnancy. (so much so that I can already imagine being pregnant again one day......)

I think that it is to your advantage to know now. So many don't know. You and the doctors can be prepared. There are so many amazing babies here on this site, who have gone through so much, and they are so strong! Your baby will amaze you.

Welcome Karen and oscar! I didn't know about Daniel and Ds until shortly after his birth. He will be 2 this November. I can honestly say for us, the journey has been great, he is wonderful! You will so enjoy your little one!