Possibility of Down Syndrome-Questions?

Rebecca - posted on 12/15/2012

I was 19 when I found out my baby had down syndrome I had a cvs done when I was 10 weeks and found out at 13 weeks that my baby had down syndrome and that my baby was a girl ! My partner didn't handle it very well he had an emotional break down as he was worried about what people would say and then he would lash out he didn't care that our daughter had down syndrome but he knew how ignorant people can be when our daughter was born she was 4 weeks early her labour was spontaneous and very fast ! She weighed 5lb 8 1/2 oz she didn't have 2 go 2 intensive care but she had 2 stay in just invade she didn't feed she was in for 1 week my daughter has 2 attend lots of appointments and she is always ill and constantly has chest infection so we are always in hospital a lot ! My daughter has 2 heart conditions she can not talk she has a lot of allergies she is deaf she is now 2 she can not walk and we are pushing for physical therapy ATM which she has been turned down 4 once she also has a problem with her feet which can not be fixed untill she is walking I LOVE MY PRINCESS and wouldn't change her 4 the world and also her big sister loves her and she is 3 she understand that her baby is poorly and a lot of people have 2 come and see her but she is great I would not change her for anything she is the most happiest and joyful baby I have ever seen and she brings so much joy into our lives I love her !!! But not all down syndrome children have the same problems !

Nicole - posted on 12/09/2012

My daughter was a down syndrome baby but she had heart and lung problems ...they are bundles of joy ...it was difficult ...I would have the test done...

Kerry - posted on 12/08/2012

The best advice I can give as a mum to a beautiful 6 year old little boy with DS is that they grow just like other children. The only difference is that you get a baby for longer. Most mums only get a baby for 9-12 months before they start walking and talking and becoming independent. When your little bundle of joy has DS you get the baby joy for about 18months. I loved the fact that Cian was a baby for longer and have loved watching him learn each new skill. A child with DS teaches us how we learn to walk talk and learn because each thing they learn takes them a little longer but each new thing learnt is a major achievement to them and makes your heart swell with pride.

Yes there are hard times and medical hurdles to meet but they are just things they you take as they crop up don't look upon them as a major hurdle but a life plan.

These children are extra special they teach us how to look at the world in a different way and I can honestly say that Cian has taught me to be a better person and to enjoy life no matter what it throws at us

Xxxx

Danniella - posted on 11/29/2012

Hi all. I have four children ranging from 18-8. The eldest 3 are all free from downs but my youngest has downs. All of my children are so special for the individuals that they are but my baby is extra special just because he needs a little extra help to make his life the best. I found out he had downs after I had him, a total shock having 3 other "normal" babies. I did not want to shout he had downs & get the sympathy vote & the poor little thing speech so I did not tell a soul not even my family! Of course they could see but nobody ever spoke to me about it. I treated him & have brought him up exactly as I did my others. Very spoilt!! He is a dream,an absolute little star & what a character. He gets told off as normal if need be, he has been taught everything the same way the others have & for this reason I think he thinks he is a "normal" child. Of course he was a little late potty training & walking etc but so what, who cares? I refused point blank to have the special needs health visitor have anything to do with him after she told me he would have behavioural problems because he was still having a bottle at 18mths!! Stupid woman working on the ridiculous statistics again. No child is the same & certainly no downs child is. It annoys me so much when they start comparing or using a statistic to tell me what my son will do & when. For people who have downs babies all I can say is you know your baby/child you do what you think is right & so what if they are late walking talking or toilet trained. They get there in the end in their own time. Having a child with downs was a shock at first,but I wouldn't change my boy for anything,ever. He can read,write,use a computer,is a genius on call of duty & gives the best cuddles!! My hubby had a vasectomy before we had him but now we are planning on a reversal..so.....we certainly have not been put off having anymore kids. We were blessed & honoured to have been given our gorgeous boy who was just that little bit more extra special. Some days will be hard but the majority will be so much fun, & when you are feeling a little down in the dumps you can guarantee that your special little bundle will always make you smile.

Amy - posted on 10/25/2012

Hi there. Our son will be turning 2 in November, but I remember well what you are going through. When I was 12 weeks pregnant, my husband and I were told there was a 1 in 10 chance of our baby having Down syndrome. We chose to do a CVS which confirmed the diagnosis. We were devastated, passing through several stages over the course of several months before we came to terms with it. By his birth we had accepted the diagnosis, and were looking forward to meeting him. Now, he is the biggest joy in our lives. There were health struggles at first stemming primarily from his congenital heart defect, but since the repair he has thrived. He's energetic, loving, funny, happy, easy-going, curious, determined, and, well, the greatest little boy we could have ever asked for. At first I thought that Down syndrome had ruined my baby. But after meeting him I realized it was the Down syndrome that makes him perfect.

Edith - posted on 03/13/2011

Sharon as a mother of a 17 year old I think you discribed Joey. He is in Special Ed not main streamed. I am a proud mother saying my child is the only one to maintain a 4.0 all year. You never know what to expect our children to do. They give us more suprises than my "normal" child did.

Sharon - posted on 03/13/2011

Nick was our second child and the pregnancy was so much different then my first pregnancy, my first pregnancy our first baby was so active. The doctor suspected there was something wrong and ran teh sisteen week blood test which suspected something was wrong as it happened with my first pregnancy. As time passed, the doc wanted to run an amniocentesis and do genetic counseling, I refused as I thought I didn't want to know even though I felt something was wrong. Nick was born at 38 weeks by cesarian birth, the doctor pulled him out of my body and right away looked at him, his hand crease and space betwween his toes. He does have trisomy 21 but you never know what level your child will be at. Some kids with downs may have this abnormality and some have many things they do really well; you never know. It is all I know is that Nick is a wonderful member of our family, he never ceases to amaze us. We tease him and he teases us back; sometimes he gets it and sometimes he doesn't He is loved by all around him. People with downs are a wonderful gift and so are the families that are given people with downs. Sometimes docs and their tests are nothing and not a cause of worry and stress. Just take care of you and your pregnancy by making good choices then you know you did the right thing.

Angela - posted on 01/31/2011

My first child has Down Syndrome. NONE of the tests predicted this. We (and the doctors) were shocked. 3 years later, I am pregnant with 2nd child, the docs tell me the tests show that she has Down Syndrome also. We decide to do Amneo (cannot remember how to spell). I am in the exam room, the ultra sound says the baby is in a great position for the amneo test, nurse comes into room with huge needle. I chaned my mind. I knew I would keep the baby no matter what, so why risk it.
Second daughter does NOT have Down Syndrome. Doctors do not know everything.
1st daughter is 19 now. She has 2 younger sisters who are "normal" Well . . . they are teenagers so they are not really normal. They are annoying. Having a child with special needs is challenging, but also very rewarding. Not just to the parents, but also the siblings. I think my other 2 daughters are better people because of Suzie. They are kind and accepting of others. I was a much more patient mother to all my children than I would have been.
I want to say "I would never wish a Down Syndrome child on anyone" But I CANNOT. I wouldn't have it any other way.
I hope you have a beautiful and healthy baby. Good luck

Cindy - posted on 01/30/2011

My little girl is now 9 years old and has Ds. We had the blood work done before we tried to have an Amnio, the blood work was positive, but the Amnio would have been the true results. So after we tried the Amnio (the Dr. could not stick the needle in the sac, I quickly stopped it because I was in so much pain) so we found out the day she was born. Karra was born healthy with no heart problems. She is full of life is a girl scout and also a cheerleader and we go to competitions with our team. She is so much fun. Take a look at this video that our Down syndrome association made:

Edith - posted on 01/26/2011

Mrs Jones I think you pretty well covered things in a great way for her. Joey has web toes (the two small ones on both feet) That is normal too but no problem. I can not tell you the love you can have for these child and the love they have to give. Yes, we love our "normal" child with all the love a parent can have but a "special needs" child has that something extra that can not be explained. Every where I go I keep saying that prayer with some one gave me a peice that can only come from God when we were told our baby may have ds. With ours you would have to have been there but even people not in a church could feel the Holy Spirit around him when he was only days old. When he was 3 years he preached as many prechers did. Never underestermate what your child knows. With Joey he knows a lot more then he lets us know he does. Be prepared to be shocked often by your child. And most of all welcome to the "club" of parents with the most loving child in the world.

Alisha - posted on 01/26/2011

First off,Congratulations on your baby boy! i gave birth to a beautiful daughter with down syndrome 7 years ago. I was completely shocked since there were no early indications that she had DS. some of the things that i wish i had known then are the very basics about Down Syndrome. Your baby may be born with some unique and darling features such as beautiful almond shaped eyes, or light spots in their irises called brushfield spots that cause your baby to always have an extra twinkle in their eyes. curved pinkies, delicate features and gaps between to big toe and the rest of the little "piggies" are also common. children with DS often have low muscle tone and sometimes struggle to breastfeed. Approx 50 % of children born with DS have heart defects, there is also a higher rate of gastro issues as well so be prepared, just in case. all children are unique, but you can expect a child with DS to meet milestones such as sitting, rolling, crawling etc later than typically developing children. you will need a good support group of friends and family. you may experience times of joy and sorrow. this is normal. please understand that you did nothing wrong during your pregnancy, Down Syndrome just happens. your child will amaze you, dazzle you, frazzle you. expect to fall completely in love. there are many groups and alot of help out there, research your community to see what is available. your baby will most likely qualify for physical and occupational therapy services, you can begin these right away, usually free of charge. talk to your doctor about what to expect at your sons birth. will he be taken to a special nursery, do you need a specialized pediatrician etc. try not to worry too much, take things one day at a time and know that if you need someone to talk with that you can message me anytime! Goodluck!

Vicki - posted on 01/26/2011

Welcome to Holland!!! It is an absolutely fabulous place to be! That said, no matter what the outcome of any tests that you do get done or not and no matter if your child is blessed with Down syndrome or not, love is the only word that can fill your heart. We pretty much knew with our daughter, she had problems with her heart and the pediactic cardiologist told me right off "oh, you are going to have such a wonderful life with this little one, your baby is going to be born with Down syndrome, but that doesn't mean anything is wrong." Glad to have had him around. We did have the amnio done but I was nearly 6 months along and like I said by that time we already knew so it didn't matter but the hospital wanted to be 100% sure. Children are all special so that is the only thing that needs to be known.....Congratulations on your first child I know that you can not wait to hold this baby in your arms!

Jennifer - posted on 01/25/2011

MY SON IS 11 YRS OLD,, HE IS MY WORLD! I NEVER GOT ANY TEST DONE OR ANYTHING WHEN I HAD HIM I HAD NO IDEA WHAT DOWNS WAS I JUST WANTED TO TAKE MY BABY HOME! HE IS THE LIGHT OF MY LIFE SUCH A SWEET HEART,,HE HURTS AND CRYS JUST LIKE ANY NORMAL KID HE DOES HAVE TYPE 1 DIABETES! MY ADVICE TO YOU IS TREAT HIM AS NORMAL AS YOU WOULD ANY OF YOUR OTHERS KIDS! MY SON CAN DO ALOT OF THINGS THE DR TOLD HE WOULDNT BE ABLE TO! I TREAT HIM AS NORMAL AS ANY OF MY OTHER KIDS! IF YOU HAVE ANY QUESTIONS FOR ME PLZ ASK I WILL BE WILLING TO ANWSER ANYTHING

Edith - posted on 01/25/2011

I did not have the test but no regrets Joey is a joy for everyone that he comes into contact with. He is 17 and has ds

Danielle - posted on 01/25/2011

My AFP test showed a possibliity for DS, and I had the amnio. It showed that we were having a daughter with DS. I'm glad I had the amnio because the doctors monitored my pregnancy more closely than normal, which turned out to be a good thing. She wasn't growing well because the placenta wasn't working so she wasn't getting enough nutrients (she was about 2/3 the size she should have been), and the amniotic fluid levels were dangerously low. They ended up taking her early so they could take better care of her in the NICU. She came home 2 weeks before her due date!



Finding out early also gave me time to prepare emotionally. Having a new baby is hard enough, but finding out that she won't be the way you expected is especially hard. I was able to grieve for the baby I wouldn't have and prepare to love the baby I was given. I educated myself about what to expect and got involved in a support group.



She's almost 8 now, and has very few health problems. She is a gift, pure joy! There are difficult times, of course, but I wouldn't change her for the world. She's exactly the way God intended her to be.



Good luck to you and your family!

Wendy - posted on 01/25/2011

I was warned by my doctor who specializes in "high risk pregnancies" that the first test for Down Syndrome actually has a high false positive rate. You have to decide now, what would you do if it's not a false positive? It's a big talk. My son doesn't have down syndrome, he ended up with ASD. I decided not to do the second test, because my husband and I decided we'd accept any baby we got.

Edith - posted on 01/21/2011

All the moms give great advice. I was 45 and his dad was 51. I refused the test because my child was a gift from God "normal" or not. He is 17 years old ( 5 going on 30) We were starting to plan for our retairments and knew things would change with another child in the house. I prayed a lot before he was born and after. God gave me a peace that can only come from Him. When I think of what we planned and what we are doing now, the now is much better and more fun. The dr. at the hospital told us to to be preparied for the worse in develipment but work for the best. We try to treat him as a 17 yr old with a few precautons. Because he is at only 5-7 in some ways he has to be suppervised at all times as you would do a 5 yr old. But he takes part in things that his pers do as a 17 yr old. I think the worst times for us when the gen. dr. informed us there were homes for THAT kind of person and another time when a dr. treating him for a vires in the hospital asked if I knew he had ds before he was born. then wanted to know why I was not tested leaving a great big "A" hanging in the air. (abortion) I held Joey and cried more then than when we were told he had ds. Get to know other parents and stay away from people like those 2. I had a mother of twins ds that was a big help to me for several years before she died. I have been told many times that it takes special people to care for a disabled child. The only way we feel special is that we were given a gift when He gave us our child. I would not trade the last 17 years for any thing. Expect many supprises. Joey comes up with things we did not know he knew good and bad. Set boundries of what your child can and can not do and stick close to them. The children I see have the worse times in their lifes are ones that did not have boundries. They should be the same as your other child but you have to stick to the boundries closer with a ds child. You do not want him to get confussed in what can be done or not. They will test you often and it is hard to do but it is best for the child and you can later have a good laugh. There are times I have laughed when he was testing us, told him it was funny but no way. We enjoy haveing him in our lives even in the tough times. He touches the lives of every one he knows in a good way. When Billy was growing up I was know as his mom and called that. I hear "you are Joey's mom?" 10 times more now. Most of the people around him of all ages are great with him. Normal for us was ot,pt, speach, and 5 kinds of drs. and it was and is a joy to be a part of his life. Good luck to you and your family. HAVE FUUUNNNN

DeserRai - posted on 01/21/2011

Thank you everyone for all your support and advice! I'm just happy that we will be having our first baby soon :) and no matter what happens, it'll be the greatest moment ever!

Danielle - posted on 01/21/2011

that was beautiful joanna what I lovely thought!

Heather - posted on 01/20/2011

That sounds a lot like our situation 6 years ago.I was 5months pregnent with my son when we learned that he was going to have Downs.We went to have a sonogram done to see what characteristics he had to determine he had Downs.The specialist we saw said the thickening of his skin behind his neck was an indicator of Downs.He strongly urged us to have an amniocentisis done to found out 100% that he would have downs.We said no we don't want it for many reasons.1 was there was a risk of miscarriage.And I had one before I got pregnent with my son.Plus we didn't care!He's our son.They did tell us that children with Downs have heart problems when their born.Lucky enough our son had no heart problems.But he was in the NICU for 2 weeks because he was breathing on his own but he wasn't processing enough oxygen.That was the longest 2 weeks of my life.5 months ago I gave birth to my daughter.I went through all the same testing with her to make sure she was okay.She is fine.When I was pregnent with her my doctor told me because I have a child with Downs already,I was at risk of having my 2nd child with Downs.But all the testing I went through said she is fine.I leadrned that children with Downs have small airways,nasal passage,and ear canals.Because of that myson got sick quite a bit when he was a baby.But now he is 6 and Healthy!

Lindsey - posted on 01/19/2011

I know the feeling of the unknown is a scary one. Every parent wishes they would have a healthy child, not necessrily a "normal" child, but healthy and happy. When you get news that your child could have a chromosomal abnormality, it can rock your world. I know I was a wreck for the few weeks it took to get back my results from the OB. My sister went through a similar situation as you. Her results stated that the chances were high that my niece would have DS. She and my Brother in law opted to do the amnio to find out for sure, they didn't think it would change their minds one way or the other, they just wanted to be prepared. The amnio ended up showing that my niece did not have DS. However she and my daughter were both born with some major health issues that took too long to diagnosis. No matter what happens on delivery day, you know you will love your child with every inch of your heart, you have already stated that. I just wanted to give you a story that turned out differently, when the tests showed a high possiblilty of DS, then the amnio proved the opposite. I wish you a safe delivery and happy, healthy baby. Good luck!

Stacy - posted on 01/19/2011

12 years ago, I gave birth to a little boy, whom they thought had DS when he was in utero. My triple screen came back possible Downs, after a very long sonogram they came to the conclusion he did not have DS, and they offered me the amio test but my husband and I decided against it, we felt that no matter what we were keeping the baby so why risk it. My son was born with a one of kind chromisonal abnormality. As I stated he is 12 years old, he is the same size as his 6 year old brother, he has scattered developmental skills. He walks actually runs, he cannot talk well clearly enough for others to understand. But as someone stated earlier, we also treat our son as if he was not special and I feel that is how he has developed as much as he has. I will not lie its very stressful at times, and I would not trade him for the world. He makes us smile daily, and he is a happy little man. The way you deal with it is....by educating yourself! Make sure you don't leave any rocks unturned, never accept a “just because” attitude from anyone including doctors. If you do have a special baby, you will meet people and learn stuff you never knew existed.

Rebecca - posted on 01/18/2011

HI, we had the AFP test and it was normal and our son was born with DS, so what does that tell you about prenatal "testing". Either way, i would not trade our son for anything. he is the light of my life and special in so many ways. he is very loving and is not terribly delayed at this point. He is 15 1/2 months and we are working on cruising. We were delayed b/c he had open heart surgery at 3 months old. They will check him before he ever leaves the hospital as heart defects in kids with DS are very common. As far as anything else goes, treat him like any other baby, love him, feed him, care for him but get therapy started as soon as possible, it makes all the difference> and dont let anyone tell you he is not " delayed enough" they call it "early" inteervention for a reason, not "after the fact" intervention. Good Luck!

Jennifer - posted on 01/18/2011

The same thing happen to me when i was pregnant and they told me they wanted to do test to check for sure and i refused. I was 17 yrs. old when I had my son and I knew before the doctors did that he had Down Syndrome i use to volunteer with Special Needs children and so I knew. The only thing i can tell you to prepare for is the possibility of health issues other than that having a child with a Special Need even tho challenging at times is a TRU BLESSING and now my son is going to be 19 this year. WOW!!! the best thing you can do as you said Love him NO Matter what. Hope this helped.

Joanna (Asia) - posted on 01/18/2011

Hello ,
I just want to say how much love can be felt from all your posts:) but also would like to point something out about those screening tests.I have personally heard storiesfrom other moms themselves that their tests have shown the risks of having a DS babies and when they were born they did not have DS. These tests are not 100% conclusive. I know many of us would like to know ahead of time if our children are OK and "normal". But in my experience, not knowing was better for me. I have a special need little girl, not with DS but some other issues that are not diagnosed as anything known so far, she has a congenital brain malformation, tracheostomy is exclusively g-tube fed because of vocal cord paralysis. And in the womb she seemed just fine. After she was born she almost died because she could not swallow and was choking on her own secretions, loosing her oxygen and other things .For four months doctors could not figure out what was the matter with her. She was called the "mystery girl":))
Today she is so much joy and fun to be around, she is a little behind with her development but you could never tell by looking at her. And for her her differences are the norm. She is our Monika , our trach-girl with a g-tube. She knows that feeding time means opening her g-tube, turning the pump "on" and sitting in her highchair watching DVDs with her favourite shows because it takes one hour to finish her food.We love her "just the way she IS".
Here is a link to a very special video I just love...maybe you heard it and saw it but I dedicate it to you today.

Enjoy:))

Lisa - posted on 01/18/2011

Susan~I love your comment about seeing the person and not the disability. Wish everyone could see it that way~they would benefit and so would our children~thanks!

Susan - posted on 01/18/2011

My first son was born with Down Syndrome and it was a huge shock. I had no screening or tests as I was not considered high risk due to my age. I am wondering however why the Dr said you were high risk? Did you have screening? or is it your age? Neither of which can tell you with any certainty if your child has DS. Either way my advice is this.... Enjoy your baby no matter what the syndrome. See the baby and not the disability. If your baby has DS you will be upset because like all mothers you only want the best for your child. For me it was the fear of the unknown. But I can say with my hand on my heart that having my son has been one of the most positive experiences of my life. It changed me, my outlook on life and taught me to see the person not the disability. My son is 7 years old now and he is affectionate, funny and a happy child. Don't get me wrong it's not all smiles and hugs, it can be tough when you see your child struggle. And my son can try my patience! Every child with DS is different, their personality , their strengths and weaknesses. DS doesn't define a person. When he was born I cried so many tears, it never crossed my mind for one second that this could happen but if there was a crystal ball that I could have looked into to see him in the future I would have felt so proud to be his Mum and I would have been excited to get to know my baby! Congratulations and enjoy your son!.

Angela - posted on 01/18/2011

When I was pg, I didn't even take the tests. Whatever happens happens. Granted, it's always nice to be able to prepare. But I had heard of so many of those tests not being correct, either the DS was a surprise or there wasn't a baby with DS when arrived. My suggestion is to take the test results with a grain of salt. Be prepared (the other ladies suggestions about books is a good one) maybe find a down sydrome group in your area, talk to them. Know that as you mentioned, you're going to love him no matter what. Since the dr mentioned this high possibility, will you be able to get more ultrasounds? They should be able to do some measurements as the baby is growing and you should be able to see from that vs a more invasive needle test. That should help with more knowledge if you're able to get it (maybe if you can have your dr require it for insurance reasons). Otherwise, just go to a grocery store, a mall, or wherever there are many people. Then just sit and people watch. I bet you see many types of children and how moms/kids react. My son isn't downs, but he's slower and it just takes longer for him to learn something - which as mentioned is our normal. My son's twin doesn't get why he doesn't get to go to therapy as well, thinks he's missing out on some fun :D
Good luck! You've got a few months to check things out. Let us know how it all turns out!

Lisa - posted on 01/18/2011

Congratulations~little boys are so much fun! We have a 4yr old dtr w/DS and did not have any tests done in advance, but I had a gut feeling that something was dif. and wasn't surprised when she was born. The best advice I got after she was born was from a mom w/an older dtr w/DS. She told me to enjoy the baby stage because at that stage there is not as much difference. Although we started therapy shortly after she was born, we treated her just like our son. She is a perfect addition to our family and although there is more work involved it just became part of our new normal. One thing I would suggest is that if you have any other children that you make special "dates" w/them. Our son started thinking that therapy was a special treat for our dtr and all he got to do was watch. Wishing you all the best as you anticipate your sons birthdate~

Patricia - posted on 01/18/2011

I have a 12 year old with DS and I think the reply by Erin Sheldon hit the nail on the head. They are GREAT kids! Just a little bit different. Harder in some ways than typical children, but easier in some ways than others. I just take it a day at a time and enjoy it all.

Erin - posted on 01/17/2011

My daughter has a different chromosome disorder but one of her best friends has Down. In most ways, he is a typical kid, but acts young for age. He doesn`t have any health issues. He`s totally cheerful and fun to be with. He resents it when he`s babied and when he can`t do what kids his age are doing. He desperately worships older boys and wants to be one NOW. He gets more frustrated than my daughter and is more aware of his disabilities than she is, but his frustration is directed at people who don`t give him opportunities or who treat him different, not at his disabilities themselves. He takes more discipline than a typical kid might, but he`s a good kid, infectious smile. He is in Grade 2 and doing kindergarten level schoolwork, which to me is amazing since my daughter has much more significant delays. We really enjoy him and especialy enjoy his cheerful personality and his laughter. His laugh could make the Grinch smile. Good luck! I hope your child is totally typical but if its not, the extra chromosome doesn`t have to define him. Its just part of him. At least with my daughter, from her own perspective, her missing part of a chromosome is just part of her normal and I don`t get the impression she resents it.

You might look for a few books that I read when Maggie was getting diagnosed. I LOVED LOVED LOVED the book `Choosing Naia.` Gorgeous book. Also enjoyed ``Expecting Adam.`` Both are about couples choosing to have a child after getting a Down Syndrome diagnosis invitro. I think you`ll find that they really explore all the issues and questions you likely have.