View Full Version : down's syndrome and heart defect...
wife-n-mommy 06-02-2008, 12:37 PM I was told today that the baby I'm pregnant with has AV Canal (some kind of heart defect) and has 6 out of 7 known visible fetal marker signs for Down's Syndrome. We are heart broken and never thought it would happen to us. I'm still trying to process everything. I just wanted to see if there are any of you out there who have dealt with this type of thing.
They want me to have an amnio done to rule out Trisomy something... they said that if the baby had that, then they would not want to worry about doing the heart surgery on her or bother giving me a C section when the baby in that case would not likely live very long. For that reason, I will not be having the test done. I would much rather endure anything necessary to TRY to save my baby than to know that there was not even any attempt made.
I believe that all possible should be done to save a baby and what happens is left up to God.
Anyway, thanks for reading and if there is anyone out there dealing with something similar please contact me. I'd really like to talk to you. Thank you.
Rain. 06-02-2008, 12:40 PM I've never dealt with it but wanted to offer you lots of :hugs :hugs :hugs
FTCWifey 06-02-2008, 12:41 PM Oh my goodness, I am so sorry. I don't have any experience with any of that but if you need anything or just someone to talk to, please feel free to PM me.
Mommy2Bailey 06-02-2008, 12:42 PM I am so so sorry. :hugs
:hugehug
downs kids are amazing, wonderful children. i've worked with several and had a very good friend as a child with downs. :hugehug we're all here for you!!
SnarphBlat 06-02-2008, 12:43 PM :hugs
You have our support, i'll be praying for your baby. :pray
rosebud* 06-02-2008, 12:43 PM i have no experience with any of that. :hugehug i just want to wish you good vibes and lots of prayers. :hugs
Tiffany 06-02-2008, 12:45 PM :hugs I would have made the same decision as you. I would want everything thing done to save my child. I have worked with several children that have disabilities including downs. They are some of the most beautiful wonderful children.
*~*Cori*~* 06-02-2008, 12:50 PM Oh Sweetie you are in my thoughts and prayers Darling. (L) :pray
USNIwife 06-02-2008, 12:51 PM I cried for you, :tears, :tears, :tears. Anything I can do help. Anything. PM me. (L) ya
Navywife85 06-02-2008, 12:51 PM :hugehug im so sorry i :pray everything will work out for you and your family.
*Sarah* 06-02-2008, 12:53 PM I am very sorry that you are having to deal with this. Good luck with your decisions :hugs
Brandi 06-02-2008, 12:55 PM I really hope everything is okay with your baby. I know you must be completely overwhelmed with worry and anxiety right now. :hugs (L)
harrisonsdream 06-02-2008, 12:56 PM :hugs and :prayers to you
I am sorry to hear that, but I've personally know a little girl with Down's and she is AMAZING, sweet, loving and smart. Hugs to you!!!
Ellen 06-02-2008, 12:59 PM :hugs
While I personally haven't dealt with any of those markers I felt I should share that a friend of mine has. She had all of those markers in screening and she delivered a healthy baby. I hope everything turns out ok! :hugs
MelissaMc424 06-02-2008, 01:01 PM I have nothing to offer other than :hugs and to let you know that my PM box is always open.
aelsass 06-02-2008, 01:03 PM Aww you are such a strong person and you are going to be blessed with a great baby. God does have a plan and yes its in his hands.
pennylayne 06-02-2008, 01:09 PM I know you must be heart broken, But sweetheart...You need to have the amnio for Trisomy 18 done. Babies who have this are often still born, or live only an hour or after heir birth. If this is the case, Than you need to know so that you can prepare yourself emotionaly, and your husband, and your children. The dr (unfortunatley and i know it sounds harsh) is right. There is no point in doing the surgery if the baby has Trisomy 18. There is nothing hey can do to help her/him. Take he est sweetie. If it comes back negative, You can start getting ready to Care for yout babies special needs when it comes home. And you know something. Down syndrome is not a curse. I takes an amazing mother to care for a child with down syndrome, and I know you can handle it. this is a gift to both you and child. This soul choose you to be born to. Children with DS live long and happy lives just like other children, hey sing and dance and read and wrtie and play and laugh and enjoy life. But PLEASE PLEASE get the trisomy test. I encourage you to go to www.nilmdts.com and Go the gallery and read about some of the babies who had trisomy. Try to be positive for your families sake, until the reults come back. Your a strong woman and I know you can get through this.
edi to say there are a couple different types of Trismoy...children with trisomy 13 can offten live long lives, children with trisomy 18 mostly leave us as soon as the've come.trisomy 21 is downsyndrome
~Christina~ 06-02-2008, 01:13 PM I'm so sorry...my friend is dealing with this currently her daughter was born with a heart defect and had to have surgery to repair it...as well as down syndrome and she is one of the most sweet babies i have ever met...never cries and is always happy...:hugs and :pray for you...
Laura48 06-02-2008, 01:14 PM I am so sorry to hear about this news. :hugehug to you and your family. You will all be in my thoughts and prayers.
flangl18 06-02-2008, 01:15 PM I have not dealt with any of these, but I just wanted to let you know that my prayers are with you and your family. This will be such a challenge for you and I hope that we can all be here to support you.
LaneyBug 06-02-2008, 01:22 PM I'm so sorry. I can't imagine how you must be feeling right now, well, I can a little bit, but it must be very hard. We are here for you.
USNIwife 06-02-2008, 01:38 PM I know you must be heart broken, But sweetheart...You need to have the amnio for Trisomy 18 done. Babies who have this are often still born, or live only an hour or after heir birth. If this is the case, Than you need to know so that you can prepare yourself emotionaly, and your husband, and your children. The dr (unfortunatley and i know it sounds harsh) is right. There is no point in doing the surgery if the baby has Trisomy 18. There is nothing hey can do to help her/him. Take he est sweetie. If it comes back negative, You can start getting ready to Care for yout babies special needs when it comes home. And you know something. Down syndrome is not a curse. I takes an amazing mother to care for a child with down syndrome, and I know you can handle it. this is a gift to both you and child. This soul choose you to be born to. Children with DS live long and happy lives just like other children, hey sing and dance and read and wrtie and play and laugh and enjoy life. But PLEASE PLEASE get the trisomy test. I encourage you to go to www.nilmdts.com and Go the gallery and read about some of the babies who had trisomy. Try to be positive for your families sake, until the reults come back. Your a strong woman and I know you can get through this. edi to say there are a couple different types of Trismoy...children with trisomy 13 can offten live long lives, children with trisomy 18 mostly leave us as soon as the've come.trisomy 21 is downsyndrome
K, I think that too. I think that we choose our families here and that if you want the baby and I know you do, you pray with all your heart and others will too. I promise I will personally, that your baby is able to live life in this world and survive and as shocking as down syndrome is, it's like she's saying above. This baby is special and if they baby makes it and is here, than it was entrusted to your personal care for development and while it may be saddening, etc. I think it's a gift that they would have you for a mom. :hugs
jhlyon51906 06-02-2008, 01:48 PM Be careful. My tests all came back the same way, the dr wanted me to have an amnio and I chose not to. No matter what I would love my child, I didn't need to know and didn't need to put myself or my child through the risk. Turns out, little Tyler is perfectly fine. Not to get your hopes up, but there are false positives (or interpretations) on those tests that your dr probably won't tell you about. Good luck.
Lckychrmzz 06-02-2008, 02:01 PM My mother-in-law was told that her first born son would have down syndrome, be deaf, blind and wouldnt live long. He had NONE of it. They told her from the beginning to abort him... FIVE doctors told her that and she wouldnt listen. He came out healthy as a horse and relatively normal. (he has been in trouble with the law since he was 17 and is now 27) Other then ADHD and some mental problems he is healthy. There are cases where the children come out with either a lesser case of whatever or nothing at all. Either way I know yall will love and care for her. We opted out of those test b/c either way its our child, we're keeping it, and we will love it just the same if not more.
Victoria 06-02-2008, 02:03 PM Hugs Katie! I really hope there will be more of a positive outcome and that your lil daughter will become a miracle baby! :hugs
airmanssweetie 06-02-2008, 02:20 PM :hugs
Berkley 06-02-2008, 02:26 PM :hugehug
leftover 06-02-2008, 02:28 PM My sister had a baby a couple years ago that had a heart defect.. They could have partially corrected him with surgery immediately after he was born, but he would have lived a terrible life.. Physically restricted from all playing, and wasn't expected to live past 4 years old..
They chose to not do the surgery, and let him pass quietly.. He lived for 2 days.. She's never regretted her decision.. It's not exactly the same situation as your's, but leaving everythings in God's hands is always the best decision no matter what you're facing..
Loretta 06-02-2008, 03:47 PM My nephew has Downs and was born with a hole in his heart. He had open heart surgery at six days old and is 15 now. He is the sweetest, most loving, innocent, playful, brilliant little boy I have ever had the pure grace of being related to. He is a miracle and a blessing and I am moved to tears daily by how he finds joy in the smallest of things.
http://a249.ac-images.myspacecdn.com/images01/52/l_804a6035d8632f654eed91c905d5d2f0.jpg
I spent four years with him as a caregiver, PLEASE feel free to PM me about anything in the world. :hugs
wife-n-mommy 06-02-2008, 04:10 PM Be careful. My tests all came back the same way, the dr wanted me to have an amnio and I chose not to. No matter what I would love my child, I didn't need to know and didn't need to put myself or my child through the risk. Turns out, little Tyler is perfectly fine. Not to get your hopes up, but there are false positives (or interpretations) on those tests that your dr probably won't tell you about. Good luck.
This is exactly how I feel about it and why I'm choosing not to have the tests done.
little.lili 06-02-2008, 04:19 PM :hugehug
I think that you have a beautiful heart for dealing with this the way you are. And I am sure that you are carrying a beautiful child so so SO lucky to have such a caring mother.
My prayers are with you. I hope that everything turns out for the best!
JKirstiH 06-02-2008, 04:30 PM My nephew was born with the same condition a year and a half ago. I did a lot of research on it. Pm me if you need to know anything.:hugs
FratchTX 06-02-2008, 04:37 PM Your family and your baby are in my thoughts and prayers. Since I have no kids of my own at this time, I do not have any experience with this sort of thing personally- but I have worked with Downs children through my volunteer work and they are hands down some of the most loving and amazing kids out there.
We are all here to help and support you in whatever way we can.
Fidzy 06-02-2008, 05:27 PM lots of :hugs
I know you will love your child and that's all that matters to me.
|
|