DeserRai - posted on 01/17/2011 ( 33 moms have responded )
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At my last doctor appointment, my doctor informed me that there is a high possibility that our son has down syndrome. She let us know we could do further testing but my husband and I didn't want to take the chance of a miscarriage. I was wondering if anyone else is going through this and how you're handling it? Also, those who have children with Down Syndrome, what can we prepare for and expect? We love our son no matter what happens but we are also wanting some advice about what to expect in the future as well. Thank you!
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Susan - posted on 01/18/2011
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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!.
Kim - posted on 04/08/2014
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I had extra tests because they said I was older. A call from the Dr's office said my test came back, prob. Downs. I would of aborted, our oldest is blind & I would not want to do a special needs child again or would I want our kids to feel responsible for this child when I am older. Luckily, the test was so, so wrong :)
Rebecca - posted on 12/15/2012
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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 !
Amy - posted on 10/25/2012
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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.
Alisha - posted on 01/26/2011
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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!