UBBFriend: Email This Page to Someone!
  National Association For Down Syndrome Discussion Board
  Open Forum
  PREGNANT WITH DOWN'S BABY (Page 1)

Post New Topic  Post A Reply
profile | register | preferences | faq | search

This topic is 3 pages long:   1  2  3  next newest topic | next oldest topic
Author Topic:   PREGNANT WITH DOWN'S BABY
LizDeS
Member
posted 10-01-1999 02:00 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
We are 18 weeks pregnant and just found out our little girl, Victoria Rose, will be born with Down's. Has anyone else been in this situation?

IP: Logged

sister
Member
posted 10-01-1999 02:20 PM     Click Here to See the Profile for sister   Click Here to Email sister     Edit/Delete Message Reply w/Quote
I did not find out until my little girl was born. Is this your first child?

IP: Logged

LizDeS
Member
posted 10-03-1999 08:07 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Sister..This is my second child. My oldest daughter will be 20 yrs. 1 day before Victoria is due. My husband has a 13 yr. old daughter. This is our first together. We emailed you a longer note...from LizDSantis@aol.com. I hope you don't mind. We thought it may be a little more personable.

IP: Logged

Tricia
Member
posted 10-31-1999 07:56 PM     Click Here to See the Profile for Tricia   Click Here to Email Tricia     Edit/Delete Message Reply w/Quote
I also did not know until the day after my daughter was born. It came as a complete shock since I had the AFP test AND 5 ultrasounds. My daughter was also born with complete A/V canal disorder. My aadvise would be to get as much info as you can and talk to people. I didn't know the first thing about down syndrome or what to expect and that was the worst part of all. This is my third child. Best of luck to you and congratulations.

IP: Logged

LizDeS
Member
posted 11-01-1999 03:10 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Trisha...Thanks for responding. Well, I can't even imagine finding out after the fact. It must have been devasting. I am glad we know ahead of time so we can be prepared for her when she gets here. We contacted the local NDSS chapter immediately and met with them 2 days later. We are very lucky there is so much support our there for us. We had our Level II u/s and Fetal Echo last Friday and fortunately, they see no cardiac defects or defects with any of her other organs. How old is your little girl and how is she doing? Did she have to have cardiac surgery?

Please keep us posted...Thanks again.
Liz

IP: Logged

Tricia
Member
posted 11-01-1999 03:29 PM     Click Here to See the Profile for Tricia   Click Here to Email Tricia     Edit/Delete Message Reply w/Quote
Yes, she had to have open heart surgery at 5 weeks of age. It was a very difficult thing to go through but in a sense it was easier to accept than the down syndrome beacuse atleast it was correctable. She is 13 months old now and is doing fanatastic. She does need to go back for more heart studies including a heart cath next week. But, she is crawling, standing and walking along furniture. she is very active and fortunately has very high muscle tone.
You should try and set up with your local early intervention progam ASAP to find out what programs are available to you in terms of physical, ocupational and speech therapy. the sooner you start the better.
When is your due date? I love babies and very much want another one. My husband is very nervous about going through everything again, plus we already have 3. Maybe someday...Do you mind if I ask where you live?
Keep in touch

IP: Logged

ANGIM_68
Junior Member
posted 11-02-1999 01:07 PM     Click Here to See the Profile for ANGIM_68   Click Here to Email ANGIM_68     Edit/Delete Message Reply w/Quote
Hello. My name is Angi. I also didn't know until Jarrett was three hours old. He also has the A/V defect, plus his Aerota was blocked off. Now he has developed some kind of lung problems. I'm actually glad I didn't know before he was born. I'm a worrier and it would not have been good for Jarrett had I known sooner. I lost three months worth of sleep just because I thought he would weigh over eight pounds, have low blood sugar, and not have fully developed lungs.
I will keep you in my prayers and good luck to you. Keep reading about DS, it helps a lot. Also, I'm glad that there has been nothing major detected. That's real good news. I'm having a harder time with Jarrett not going home than with his DS. His surgeries are what scare me, the DS is nothing compared to the organ problems. Again, good luck and God Bless.

IP: Logged

LoisR
Junior Member
posted 11-02-1999 03:38 PM     Click Here to See the Profile for LoisR   Click Here to Email LoisR     Edit/Delete Message Reply w/Quote
I found out about my daughter, Ruthie, when I was 7 months pregnant. I spent the next two months contacting my local DS association and talking with the infant stimulation program professionals in my community. I felt much more prepared for her arrival and basically "hit the ground running" after she was born. Ruthie began the infant stimulation program at 6 weeks and it has greatly increased her skill levels. I will tell you that I grieved for her when I found out however grieving has provided the healing balm to face each new day with her. She is 10 mos old now and fills me with joy. Best of luck and stay healthy!

IP: Logged

LizDeS
Member
posted 11-04-1999 07:55 AM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Trisha, Angi, & Lois...My DH and I have been researching DS since the day we found out the news. We contacted the local chapter immediately, and even attended their Buddy Walk 2 days after finding out. They were wonderful and have supplied us with all the information you can imagine. We are very internet friendly and have gotten some great info from here as well. We want to be able to as said "Hit the ground running" when she arrives.

I know how devastating the news is, and know your grieving doesn't just stop. It will take time, but I do thank God that he gave us this opportunity to have this baby (My daughter will be 20 y.o. on 3/1/00 and my dh's daughter will be 14 y.o. on 3/28/00. Victoria Rose's predicted arrival date is 3/2/00.) I feel guilty at times at the fact that I wanted a baby so bad, I may have jinxed myself..but then hey-God only gives to those who can handle it.

Please keep me posted and give your kids a hug/kiss from us. Oh, BTW-we live in Easton, PA. Just moved here in June...just before we found out we were expecting. New House, New Baby...you know...

Liz & Victoria Rose.

IP: Logged

Marianne
Member
posted 11-04-1999 06:24 PM     Click Here to See the Profile for Marianne   Click Here to Email Marianne     Edit/Delete Message Reply w/Quote
Hey Liz...Congratulations on the upcoming birth of your baby! You have no idea what joy and happiness awaits you. My son is 9 months old and doing great. We found out about the Down Syndrome 5 days after he was born, we were sad but not devastated by the news. We brought him home to a 1 year old brother and they are the best of friends. Keep your positive outlook. You have been given a gift. Never doubt that.

IP: Logged

LizDeS
Member
posted 11-05-1999 07:20 AM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Marianne:
You are sooo right. We are blessed and can't wait for her to get here. We were actively trying to conceive since Oct. 1998 (I am 41 and DH is 40). DH accepted a new job in NJ (we were living in NY at the time) and moved to PA because of the commute. Well, because of the stress of selling my house and buying a new one and him living out of a hotel for 6 weeks since the beginning of May and only coming home on the weekends, we decided...since we aren't getting pg now..we will wait until we get settled and try a few more times..and if we don't-it is God's wish and if we do..ditto. Well, low and behold we found out we were expecting on my 41st BD (June 30). God did have a plan for us and wanted us settled in the new house before he let us in on it, I guess.

I am thrilled your son is doing well. We have heard from so many wonderful people about their children and are so greatful that there is so much support out there for all of us.

We were no strangers to Downs. A friend of mine's first born son had it and he was a joy. Unfortunately, Johnny passed away a few years ago at 15 yrs.-but for the short years he was here he made a great impact on alot of people. What they say is true..those disabled in some ways make up for it in others and that is SOOO true. I just can't wait for Victoria Rose to get here so I can hold her and kiss her and help her be the best she can be.

Thanks again for responding. Please keep in touch.

Liz & Victoria Rose

IP: Logged

Marianne
Member
posted 11-05-1999 09:20 AM     Click Here to See the Profile for Marianne   Click Here to Email Marianne     Edit/Delete Message Reply w/Quote
Liz and Victoria...what a wonderful birthday gift, to find out about the pregnancy. I was lucky in the fact that getting pregnant wasn't difficult. (Proof: I have a 2 year old and TYTY is nine months) I know you are scared but you are doing everything right!! Did you see that article "A baby is a baby first"? I loved reading it. Basically it says...don't stress about all the things that MAY await you. (therapy, surgeries etc....) Just enjoy having a beautiful baby. Down Syndrome or not! Have a great day!!

------------------
Mar

IP: Logged

Chris Dawn
Member
posted 11-06-1999 09:21 AM     Click Here to See the Profile for Chris Dawn   Click Here to Email Chris Dawn     Edit/Delete Message Reply w/Quote
Liz,
I did not find out Hunter was down's until he was 8 months old. He is my first child and of course I was taken back to say the least. He is the best thing in my life. He knows no hate (although he has an attitude from time to time). My friends and family were my rock and still are. You are about to experience a joy that only a few of us get to experience. Best of luck.

Chris and Hunter

IP: Logged

LizDeS
Member
posted 11-08-1999 01:36 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Marianne & TYTY/Chris & Hunter:

You girls are so right....We can't wait for her to get here. Just had regular Dr's visit and all is going well. Dr. said that since I am feeling her so profoundly is a good sign. Says it means she has good muscle tone...=) I just received an email from a girl who is 5 months pregnant and just found out her baby-to-be has been diagnosed as well. I sent this site to her. Her name is Christina..so please keep an eye out for her. She is from Singapore.

Thanks again..and we be checking back again..

Liz & Victoria Rose

IP: Logged

Pollyagain
Junior Member
posted 11-09-1999 08:16 AM     Click Here to See the Profile for Pollyagain   Click Here to Email Pollyagain     Edit/Delete Message Reply w/Quote
Liz,

Yes I've been there. My husband and I (tongue in cheek) refer to that time in our lives as the "Pregnancy from Hell.' Nothing about our little boy, Jay, and nothing that has ever happened since his birth has ever been as bad as all the things we imagined and worried about.
His Down Syndrome was first suggested by the AFP screening (I was 40 at the time), and confirmed by amnio at Jewish Hospital in St. Louis. I think I would have to say that the most difficult time of all was the 10 day period that we wated for the amnio results. After that, we knew. And after he was here, he was just Jay. We knew that we would just deal with whatever it took to give him the best possible life and the greatest opportunity we could give him.
He is nine years old now. He is included in a regular third grade classroom with a full time aide. It isn't easy. He isn't an easy child, but he's ours, whether he's pulling some little girl's ponytail, trying to punch his older brother, or watching while I cook dinner with his head resting on his little arms on the table , looking so much like the famous photo of that chubby little angel , that I would swear he was had posed for it.
If I had any advice, I guess it would be to try to enjoy this pregnancy. There is a miracle growing inside of you, and although your little daughter won't be the way you always thought she would be, she will be unique. She will be yours. And she will be wonderful.
More philosophy here than fact, I know. EMail me if I can help.

IP: Logged

LizDeS
Member
posted 11-09-1999 08:30 AM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Polly.

Thanks for your words of experience and encouragement. We are anxious for Victoria Rose to arrive. We have researched the Syndrome from day 1..and I am glad we found out before she got here. So many women I met and spoke with didn't have the opportunity, or reasoning to find out before their babies arrived, and I don't know how I would have handled it. We will be better prepared for her..and hope for the best that her disabilities are minor. Whatever God gives us, we will handle. Raising children is never easy...they are all a handful. Some moreso than others...but they are ours.

Thanks again for your advice...and support.
Please keep us posted...

Liz & Victoria Rose edd 3/2/00

IP: Logged

me
Member
posted 11-11-1999 10:23 PM     Click Here to See the Profile for me     Edit/Delete Message Reply w/Quote
The Time will come when you will even wonder what you worried about in the first place. My younger sister, Adrienne is just 14 months younger than I am. There are 6 kids in my family, The oldest is now 29 & the youngest is 23. Adrienne is the youngest. She was born 5 wks. premature & my parents did not know that she was going to be a DS child. She has thrived since that day. Her only setback, if you want to call it that, was open heart surgery at the age of 5, to repair a hole in her heart. From the day she came home, she has never looked back. No medical complications, No behavioral problems, Nothing!
We thank God every day for the blessing he has given us. Adrienne finished school at age 21. She now works approx. 25 hrs. wk. at our local Wal-Mart. She is beautiful, happy, loving, kind. But like anyone else she can have her bad days too.
The one thing we believe, as a family, that has contributed to Adrienne's success is the fact that we have always treated her like a normal person. My Brother, being the oldest, teased her as much as he did me or any of my other 3 sisters. And because of that Adrienne sees herself the same as us.
I can't even express to you how much We Love & Adore Her. She has been the best thing to happen to our family. Because of her, I know unconditional love, because that is the only kind she knows!
Do not fell sorry for yourself! Be Happy, you have been blessed w/ the best gift god can give.

IP: Logged

LizDeS
Member
posted 11-15-1999 10:35 AM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
ME....thanks for your response. We are thrilled your sister is doing fantastic. We no longer feel sorry about our baby having Down (only lasted 2-3 days) and are very anxious for Victoria Rose to arrive. We thank God he has given her to us.

Liz

IP: Logged

cathy
Member
posted 11-22-1999 09:04 PM     Click Here to See the Profile for cathy   Click Here to Email cathy     Edit/Delete Message Reply w/Quote
liz,
When I read your post i figured maybe something i could say would help. after reading all of the replies it seems that you have things well under control. You should feel very fortunate that you have access to all the information that you do.
Our daughter jessica was born 171/2 years ago when I was 18 and my husband was 19. (yes we are still married although everyone said that it wouldnt last). We had no idea that she would have any problems until the day she was born.the doctor came into my room after the csection and said your daughter has an unreversable congenital defect and left the room.I didnt even know what downs was, my mother always callled ds kids change of life kids.(change of life at 18?) this was before the internet and every book i found had nothing possitive at all so i just decided to treat and expect from her what i would have in the first place. luckily she has no health problems except for scoliosis but that has nothing to do with the downs. she is a typical teenager, loves insync and the backstreet boys has posters all over her room had a boyfriend for a year and ahalf ( that was a scary time) and pms's just like her 14 year old sister. we had a son also he is 10. i did have amnios with the other 2 just so i wouldnt have to go without knowing for 9 months. i would never have terminated the pregnacys.i would suggest getting her into an early intervention program jess started at 6 weeks. i have been working as a special ed assistant for the past 4 years in our junior high and i know how important therapys are.
good luck to you all,
let us all know when she arrives

IP: Logged

maisie
Junior Member
posted 11-23-1999 12:16 PM     Click Here to See the Profile for maisie   Click Here to Email maisie     Edit/Delete Message Reply w/Quote
Hi everyone. My situation is a little different. I am 6 months pregnant. At 16 weeks, My AFP indicated a 1 in 100 chance of Down's, and my husband and I decided not to have amnio. So far, two ultrasounds have been completely normal. I would never terminate a Down's pregnancy, but I turned down the amnio for fear of miscarriage and because I was afraid I would become depressed if the test was positive. I am 29 and thus the chances that the AFP test was off are high, but I cant help wondering if I did the wrong thing, and if I should try now to have an amnio, just so I can begin preparing myself. I cant imagine going through all the work of labor and then getting bad news. You have all given me hope that if my baby has Down's it will have a happy, normal life, but I want to hear more about your diagnostic experiences. How many had signs of DS in ultrasounds? How many had positive AFPs, and what were the odds? My doctors seem to think Im crazy for not wanting to be sure.

IP: Logged

homevent
Member
posted 11-23-1999 07:38 PM     Click Here to See the Profile for homevent   Click Here to Email homevent     Edit/Delete Message Reply w/Quote
Maisie
I am a 28 year old single mom. I was 26 when I had Hubert. My odds of having a baby with Downs was simular to yours. I chose not to get an amnio for that reason. And now I'm glad I didn't. I think the worrying would have been even more hard than the emotional rollecoster I was already on. I went in for a stress test when it got close to my date and because both our heart rates were abnormal they sent me straight to the hospitol to try to induce my labor. After that failed they first decided to wait till the next day. The heart rates got so abnormal that around 11:30 January 27, 1997 they rushed in and prepared me for an emergency C-section. I had Hubert @ 12:05 and my life hasn't been the same since. After 13 hours They were having a time Oxygennating his blood and had to air lift him to N.C. Baptist. After 3 days I was allowed to go there. Upon arrival I found out My beautiful baby had Broncial Displaysia and Downs Syndrome. I don't think it has ever hit me like some moms that he had Downs. All I could think about is the fact that I wanted him to breath and survive. We have spent 75% of his life at the hospitol and recently returned home after a 4 month stay. Hubert has had 2 treach surgerys,Minor heart surgery, and more than his share of poking and proding. But you know I would not trade him for anything and have never thought about leaving his side. Now I feel that with all we've been through if I just hold on God is going to bless us to no end. Even if he took him this very minute, although I would then be devastated, I would feel proud and honored that I was chosen. Don't let the Dr. pressure you into getting an amnio. For me now I'm glad that I didn't know. To spite all my crying it was never because of what I thought my baby may or may not be. I had a beautiful pregnancy. And I can't wait to do it again after I'm married! To you I say keep your head up and don't worry about what coming cause I don't think I could have ever prepared for or imagined it would be like this. We have a room full of equipment including a home ventilator. And you know Hubert is the happiest child I know. I would love to tell you more. Feel free to e-mail me at Homevent@aol.com

IP: Logged

Tricia
Member
posted 11-24-1999 01:08 PM     Click Here to See the Profile for Tricia   Click Here to Email Tricia     Edit/Delete Message Reply w/Quote
My case is also similar to yours in the fact that I was 28 and had two heathy children. I had the AFP and 5 ultrasounds which all showed a "normal" baby. My baby was in fact born with DS and complete A/V canal disorder. I am glad I did not know because I think worrying would have made it worse and my husband & I probably would have chosen to abort. Although I will admit I was completely devastated when I found out and I still get angry now. I did everything right during my pregnancy and look what happened. I get so mad when I see pregnant women smoking, drinking, etc & they have healthy babies. My only "advice" to you would be to relax--there is nothing you can do that would change the fact especially since you said you would not want to abort. The AFP test is really highly inaccurate. It only detects 60% of the cases. Did you ask your doctor about getting a level 2 ultra sound or one of the new 3-D ones that are more in depth? I too would be scared to get an amnio. Good luck and enjoy your pregnancy! There is nothing better in this world than feeling a baby inside you.

IP: Logged

LizDeS
Member
posted 11-29-1999 07:05 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Cathy...thanks for your input. I can't wait for Victoria Rose to show her little face...=)

Trisha, Maisie & Homevent...I never had the AFP done. I had my amnio at 16 weeks because of my age..and this gave us the answer we needed. Maybe it is because of my age, but I am very glad we know what Victoria's situation is before she gets her. We have become so well prepared for her arrival..it is scary. We also had a Level II Ultrasound and Fetal Echocardiogram done at 22 weeks to check for major organ defects..ie: heart, kidneys, lungs, etc..and all looked great. She has all 10 fingers, 10 toes..and is gorgeous. The cardiologist will be there when she arrives to make a final check..but all major defects have been ruled out. We feel very fortunate to be blessed with her and will handle any hurdles that arise. No matter what decision is made-to have or not have the test...your baby is yours to love and nourish... Oh, and yes..Victoria is quite active...must be a future soccer player...hehehehe

IP: Logged

vhayes
Junior Member
posted 11-29-1999 09:16 PM     Click Here to See the Profile for vhayes   Click Here to Email vhayes     Edit/Delete Message Reply w/Quote
LizDes,
I wasn't quite in the same situation as you are. We had all the tests our doctors recommended and were told our son was fine. We already had a daughter with Down's. When he was born, we were told he also had Down's. They both are a joy. I know there are alot of things they will never do but I do not regret one moment of either of their lives. They have given more to me than I could possibly have had otherwise. Good luck and congratulations.

IP: Logged

Elaine
Member
posted 11-30-1999 10:31 AM     Click Here to See the Profile for Elaine   Click Here to Email Elaine     Edit/Delete Message Reply w/Quote
Liz Congratulations!! I found out my daughter had DS shortly after she was born. That was 8 years ago! The doctor was more concerned about the DS than I was!
She was taken to a hospital nearly 300 miles away for an immediate procedure that couldn't be performed where we were! It was hard to let her go and she did not do well in their care. She lost 2 pounds in the first week. We were told we didn't have to take her home, that the hospital would take care of the "arrangements". They never directly said she would not survive. We took her home to a 7 yr old sister and a 10 yr old brother who accepted her immediately. She gained her weight back in a matter of days(i saved my milk). Raise your child with love and they will know how to return it. Early intervention programs are wonderful for all children. Good Luck Elaine

IP: Logged

LizDeS
Member
posted 12-02-1999 07:06 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Vhayes & Elaine: God bless you both...We can't wait until Victoria gets here....

IP: Logged

EDS
Junior Member
posted 12-10-1999 01:31 PM     Click Here to See the Profile for EDS   Click Here to Email EDS     Edit/Delete Message Reply w/Quote
The Boston Globe ran an amazing six-part series this week entitled "Choosing Naia"....it follows a family who discover they're going to have a baby with Down's and a heart defect.....it is an incredibly uplifting read and should be of interest to all.....www.globe.com. Go to the print version of the Boston Globe and all six parts of the series should be available (as of today 12/10) There's also a moving photo album....
Take care all....

IP: Logged

LizDeS
Member
posted 12-15-1999 05:44 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Thanks EDS for your input...will check it out.

IP: Logged

mikelori
Junior Member
posted 01-08-2000 10:30 PM     Click Here to See the Profile for mikelori   Click Here to Email mikelori     Edit/Delete Message Reply w/Quote
What date are you expecting Victoria? We have a 3 year old girl with Down's. She is such a delight. She is our third child.

------------------

IP: Logged

LizDeS
Member
posted 01-11-2000 07:03 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Mike & Lori...Victoria Rose is due 3/2/00. 7 more weeks!!! We are so very anxious for her to get here. We can't wait to hold her...What is your little girl's name?

IP: Logged

MARYLYONS1
Member
posted 01-13-2000 10:30 AM     Click Here to See the Profile for MARYLYONS1   Click Here to Email MARYLYONS1     Edit/Delete Message Reply w/Quote
Liz
Congratulations on the upcoming birth of Victoria - I'm sure the 7 wks will go quickly. My 4th son was born with Downs three months ago and he is the joy of ourlives. His brothers couldn't be more excited and treat him like they would any other baby. We are very lucky that Patrick is very healthy and right now he is just like the boys when they were babies except he gets visits from the early intervention team. I know you're excited now but it will only get better after your daughter is born!

IP: Logged

LizDeS
Member
posted 01-13-2000 07:05 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Mary..thanks for your encouraging words....We are very anxious for her arrival and so are our girls.

IP: Logged

proudmom
Junior Member
posted 01-18-2000 09:10 PM     Click Here to See the Profile for proudmom   Click Here to Email proudmom     Edit/Delete Message Reply w/Quote
Liz,

Congratulations on the news of your special gift from God. We found out several hours after Michael was born. He is 3 1/2 years old and is doing great. I want to share a poem with you that was written for me when Michael was born. It is called Altered Plans by Denine Renz.

I've found that God has altered plans
I made first starting out,
And though it's clear that He knows best...
there have been times of doubt.
The work I do is not the work
I really planned on doing,
And many people in my life
weren't always of my choosing.
I know for sure that it is true...
God has a plan for me,
The paths He's led me down in life
have always been the key...
To lessons learned and growing,
that I would not have done,
The heartaches and the happiness,
the battles fought and won.
Looking back on where I've been,
I've realized just one thing.
Life isn't something that you plan...
it's accepting what it brings.

Best of luck to you.

IP: Logged

LizDeS
Member
posted 01-19-2000 10:28 AM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Proudmom...

Thanks so much for your support. The poem is beautiful and is so very true. We are all anxious for Victoria Rose's arrival in just 6 weeks!

Liz

IP: Logged

Shelby
Member
posted 01-22-2000 11:04 AM     Click Here to See the Profile for Shelby   Click Here to Email Shelby     Edit/Delete Message Reply w/Quote
Hello All, I had a positive AFP in late 1995. Though I did NOT want an amnio, I finally had it "For peace of mind" (HA!). I contacted NADS after the amnio was positive and they were WONDERFUL (thanks Linda P.! ). There is a TON of wonderful information out here on the internet. I am compiling a list of websites for a presentation at our local support group meeting. My 2 favorites are http://www.altonweb.com/cs/downsyndrome and http://www.ds-health.com/ I would be happy to share my final internet resource list with anyone (when I have finished it). In the meantime, congratulations to the expectant mothers... you are in for a real treat.... my Colleen is an absolute doll and I am soooo happy to have her!

IP: Logged

emkatmom
Junior Member
posted 01-22-2000 09:06 PM     Click Here to See the Profile for emkatmom     Edit/Delete Message Reply w/Quote
Hello. I had a different experience with the testing. With my first child, my AFP indicated a higher chance of DS.We chose not to have the amnio-I was very afraid of miscarrying my baby and also honestly of finding out bad news (I tend to put bad news off as long as I can). It did make my first pregnancy much more scary and kind of sad.We went through labor expecting a baby with DS, but she was born and did not have it. With the second pregnancy we chose not to have the AFP, since it was so wrong last time. This time we had our sweet baby Kate with DS. I can't say that I think we should have had the amnio the first time or either the AFP or amnio the second...it just works out ironically some times. The AFP is just a screening which I am sure you know. I have since talked to parents of kids with DS whose AFP screening was fine. I think the decision to have the amnio is very difficult. If I were to have another child, I think I would have the amnio. Finding out your baby has DS is VERY hard at anytime, before or after birth, but I do feel that Kate did not get the welcome she might have if we had known before she was born. I feel like I had too much shock and sorrow to make her first months what they should have been. Good luck.

IP: Logged

LizDeS
Member
posted 01-23-2000 03:37 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Shelby & Emkatmom:

Shelby...we are very excited about Victoria's arrival. I have several friends and family members that say "maybe the test was invalidated by some means.. Don't have too much faith in them" But we have decided that we are prepared for her totally..whether she does or does not have DS. Thanks for the websites..I have put them in my favorite places...=)

Emkat....We are very thankful we had the amnio. 99% of the girls I have spoken with never knew about their babies until delivery. I feel that by our knowing what we are in for, we have been able to do all the necessary research and have made all the necessary contacts needed to help Victoria as soon as she gets here. I personally feel I would have been more devastated not knowing..because I will have then been unprepared. Victoria is expected in 40 days..and counting....

Liz

IP: Logged

ld9381
Member
posted 01-29-2000 12:49 AM     Click Here to See the Profile for ld9381   Click Here to Email ld9381     Edit/Delete Message Reply w/Quote
Liz, I also had the AFT (I was your age at the time) and decided not to have amnio. We decided what will be, will be. When Derek was born, there was no doubt that he had DS. They still did the chromosome test to confirm. At first the doctors were all gloom and doom and some of the literature they gave us was very old. But we were given one book called DS, from birth to 3 years. It was excellent! Derek will be 6 years old on Sunday. He is a wonderful child and very loving. His almost constant smiles brighten everyone's day. I hope everything goes well for you.

------------------
Laura

IP: Logged

LizDeS
Member
posted 02-02-2000 03:03 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Laura...thanks for your response and HAPPY 6th BIRTHDAY to DEREK!!!

Well, we saw the perinatologist yesterday and Victoria Rose weighs 5 lbs. 3 oz. and is doing fine. My first weighed only 6 lbs. 4 oz. full term..so not much of a difference here. And she still has time to gain. The only visible DS characteristic they can see right now via the ultrasound is that her legs are shorter than normal. She is also BUTT first right now..trying to convince her to get to where she belongs...hehehehehe 4 weeks from tomorrow and counting..=)

IP: Logged

LizDeS
Member
posted 02-02-2000 03:06 PM     Click Here to See the Profile for LizDeS   Click Here to Email LizDeS     Edit/Delete Message Reply w/Quote
Laura...thanks for your response and HAPPY 6th BIRTHDAY to DEREK!!!

Well, we saw the perinatologist yesterday and Victoria Rose weighs 5 lbs. 3 oz. and is doing fine. My first weighed only 6 lbs. 4 oz. full term..so not much of a difference here. And she still has time to gain. The only visible DS characteristic they can see right now via the ultrasound is that her legs are shorter than normal. She is also BUTT first right now..trying to convince her to get to where she belongs...hehehehehe :confused
4 weeks from tomorrow and counting..=)

IP: Logged

This topic is 3 pages long:   1  2  3 

All times are CT (US)

next newest topic | next oldest topic

Administrative Options: Close Topic | Archive/Move | Delete Topic
Post New Topic  Post A Reply
Hop to:

Contact Us | National Association For Down Syndrome

1999-2000 National Association For Down Syndrome

Powered by: Ultimate Bulletin Board, Version 5.42a
© Infopop Corporation (formerly Madrona Park, Inc.), 1998 - 1999.

NADS is not responsible for the content or advice offered in these discussions, and unfortunately we do not have the staff resources to respond to questions you may post here. Our intent is to provide a forum where you can freely exchange information and feelings on topics of importance to you with others having similar interests. We hope you find this beneficial and we thank you for participating.