Hi Ladies,
Some background: I am 29, and am about 13 weeks pregnant with baby #2. I had a m/c last year and we have one dd who is 4.5 (no complications with that pregnancy) We had the level II genetic ultrasound and bloodwork done last week and my midwife called me last night with the results. She said that my chance of the baby having a chromosomal abnormality such as Down Syndrome is 1 in 53. That is a high number for someone of my age and with no other risk factors such as a family history. She advised that we move forward with further testing such as a CVS or Amnio which will give us a definitive answer, and we are going to do that. I also need to add that I have had unexplained bleeding (heavy at times) for the last two weeks. The doc said this could be related to a chromosomal problem. I have had numerous ultrasounds to rule out subchorionic hemmorhage, so I know the bleeding is not coming from that.
I am not sure if I really have a question, other than have any of you moms been through something similar? Of course my husband and I are so upset by this news. I know there is a chance nothing is wrong, but its scary. I am not sure if we would decide to terminate the pregnancy based on bad results. I would like to say that I would keep the baby no matter what, but I need to be realistic about what we can offer emotionally and financially to a child that is severely disabled. It is not about loving the child, we would love any baby, but there are other things to consider. I feel bad even saying this stuff, but I am just being honest. My husband and I are really struggling with this news--can any of you share your stories? Thanks in advance.
Please no rants on terminating the pregnancy, this is a hard decision we hope we will not have to make, but I am very pro-choice.
Hi Ladies,
Thanks to all who responded! I appreciate every response and have thought about each one. After doing more research I contacted my doctor again and have found out there are no "soft" markers for down syndrome on the level II ultrasound I received, (the nuchal fold measurement is in the normal range) but my 1 in 53 odds were calculated based on my accompanying blood work. This does give me some more hope that everything will be fine. My husband and I have decided at this point to go ahead with an amnio, which will definitively tell us if the baby has downs or another chromosomal abnormality that is more severely disabling. My amnio is not being done until Jan. 18th when I am 16 weeks, so the waiting is going to be the hardest for me. In the meantime though, I am definitely taking the advice of some posters and going to continue to research down syndrome and what caring for a child with this disability would entail. If anybody has any specific resources, please let me know, I would be very grateful and happy to check anything out. We are using this time until the test to educate ourselves and and consider exactly what options we will have, and what we might want to do in response. We are not making a decision right now one way or the other on terminating, but will cross that bridge if and when we come to it. This has and is a difficult time for my husband and I, but I know as long as we continue to support each other and make the best decisions for our family, it will work itself out. Thanks again for your kind words and advice and for sharing your stories with me.
**Updated 2/7/11**
I wanted to send an update for all you ladies that took the time to give a response. We did our amnio on 1/18 and it went fine. The bad part was that they do an ultrasound before the amnio to look for markers and also because it will guide the needle during the procedure. When they did the ultrasound it was obvious that something was very wrong with the baby. The abdomen was swollen so much it was about three times the size of the baby's head. There was fluid present in the abdomen and around the brain and neck. The limbs measured too short for the age of the baby and the neck fold was thick. The doctor came in and thankfully did not bs us---he told us straight out that something was wrong with the baby. He of course wasn't going to make a diagnosis, but wanted us to prepare for the worst. He said when we got the test results back that he would support any decision we would like to make--whether that meant continuing the pregnancy or not. The next two days were awful. On 1/20 I went in to my regular scheduled 16 week appt with my midwife. my husband felt it would be best to just go and let her make sure everything was okay with me. She went to listen to the heartbeat and could not find it. She called in the head u/s tech and she confirmed that there was no heartbeat and the baby had died. That was such an awful shock and I totally broke down in the office. Things moved very fast after that---we were sent over to the hospital to begin what would be a two day D&E procedure. That was tough on me emotionally and physically. Thank God for my husband, he has been so supportive, I do not know what I would do without him. I took the nest two weeks off work and school to recover. The first week I could barely make myself get out of bed, but it is getting a little easier everyday. I am seeing a therapist to work through the feelings. We received our amnio results back and the baby did have down syndrome. The baby also had some heart defects which caused the swelling and fluid retention and ultimately fetal hydrops which is fatal and caused the heart to stop beating. The amnio in no way caused this to happen. This has been the most trying time in my life, but right now I am just taking it one day at a time and knowing it will get better. Thanks to anyone who took the time to read all this!
I never even had the tests because it wouldn't have mattered. I would have just dealt with whatever came out. Downs Syndrome or not, every kid has issues of some kind or another, you don't know till they grow what those issues will end up being. So, ignore the results and go with the flow of being a parent.
I had the same thing told to me and I have a healthy rambunctious 2 yr old invencible fearless all boy. :) I chose not to do the amnio.
I hope you will not get too many rude comments about considering your options. Fact is that you have options and they are all worth considering.
I have many friends who are older mothers, who had routine Amnios - and you may not think about it when you read the many comments on threads like yours, but many of my friends knew going into it that they would not carry the pregnancy to term if the amnio had a bad outcome.
I know for myself that my marriage would not survive the challenge of raising a severely disabled child - and it's ok to determine for yourself and for your family how much you can and are willing to take. Don't let anyone tell you otherwise. This is your family's decision to make and no one elses.
That said I hope everything turns out well for you! Good luck.
Read my previous posts on this if you would like. Im 22 and had a 1:18 chance of downs. I was referred to a specialist who did a 2d ultrasound and there were no markers for Downs so he suggested a repeat blood test. That came back with high odds also. So I opted for the amnio. The amnio came back normal, so no Downs. I gave birth to my DD exactly 2 weeks ago and she was born healthy, but is now having intestinal issues and is in the ICU but it has no relation to Downs or any other chromosomal abnormalities. If you want 99.6% sure answer on if your baby has downs, get an amnio. If your abby does indeed have Downs, don't consider terminating on that reason alone. Downs children are very loveable and live very normal lives. Also remember that the quad screens for Downs is known for false positives. My odds were way worse than yours and I had a healthy baby. Think positive.
you have to do whats right for you. My oldest child has a chromosonal abnormality causing mild retardation and delays. I had her when I was 15. I had no testing done, so didnt get to make choices, but I may have, based on the many hurdles and difficulties she has had to face. Sure shes happy, but I know things are better for my middle daughter who has no condition. I was told that many of the pregnancies with chromosonal problems spontaniously abort. While there are many rewards and happiness as with any child, a special needs child does have a difficult time, and to say different is ignorant. The costs for various therapies, speech, occupational etc are just the tip of the iceberg. Everything a special child does is well, special. My daughter is now 21, has graduated ( a leaving school cert. which is different) and is part time employed. I cant say I'd want to do it again, meaning, I wouldnt want such a hard life for my child.
I"m younger and my odds were 1:23. I opted not to have the amnio, because he had no markers. He was born happy and healthy. He is doing great!
I'm not going to speak about terminating, because I absolutely understand the panic that sets in. What I am going to suggest (should your baby have downs) is reaching out to Down Syndrome groups and speaking with mothers of downs children. You will get a first hand account of what it's like, the struggles, the cost, the reality, the joys, etc. I think when you have true life experiences, you would feel much more comfortable with whatever decision you make.
first of all this happens all the time and baby is fine....also down syndrome kids actually live pretty normal lives. Id read some articles and look into that first to help ease your mind. Youll be eligible for services (free) i have rarely heard of a down syndrome child being severely disabled. I think you neeed to do some more research on that and then trust your gut.
This is a touchy subject.
I was older with my second child so my ratios of complications were higher just due to my age. I'd had years of fertility issues and wasn't the healthiest throughout my pregnancy. Early tests showed certain markers, but I refused amnio.
For one thing, I have been blessed enough to know children with Down's Syndrome and not one of them is "severely" disabled. They go to regular schools, church, have siblings. They are a joy to everyone as the individuals that they are.
No one asks for a child with disabilities....we all pray for happy healthy children. But, sometimes happy and healthy is a relative term. The Down's kids I know are truly happy and healthy.
My son, for all the fears and problems I had, was born perfectly healthy with none of the things I could have scared myself out of my mind about.
I had no regrets about refusing certain tests at the time and I have no regrets now.
It's normal to be frightened. I think one of our biggest fears as moms is that our children will be born challenged in some way. But, they used to consider being left handed as "challenged". My dad's teachers used to try to "train" him to use his other hand when he was a small child.
We have more lefties than righties in the family.
I know it's not the same thing, but I'm just saying that some of it is about perspective.
Not all that long ago, they used to institutionalize Down's babies all of their lives and it's so heartbreaking to me.
I could never have let that happen to my own baby. Just my personal opinion.
I'm pro choice, but I think some of the stuff we get scared about never comes to pass. I bled heavily in the first part of my pregnancy with my son and they said to prepare myself because it wasn't a viable pregnancy. He and I almost didn't make it several times because of complications.
15 years later, I have the most beautiful son anyone could ever ask for. He fought for his life from the very beginning and I just told myself that the least I could do was give him the chance to come into this world if it was meant to be.
I can't imagine my life without him.
I wish you the best and I hope that you get the reassurance you need.
Try not to worry too much. It's not good for you, whatever you decide.
Hi, I so feel for you. My DH and I went through this 9 years ago with my first born and it was just awful. I think you have gotten some good advice-at the end of the day, you have to do what is best for you and your immediate family.
My son had three markers for Downs based on ultrasounds alone (we ended up with 13 ultrasounds total) and we were told he had a 1:27 chance for having Down's syndrome. I was only 27 at the time and was just devastated. We had no other risk factors and had a normal pregnancy up to that point. We were strongly encouraged to have the amnio so we did although I really struggled with that decision because while on the one hand I wanted to be prepared for the road ahead, I wasn't sure if I wanted to feel such a level of despair/sadness,etc for the remainder of the pregnancy.
Today we have a healthy 8 year old--everything came back normal with the amnio results. I feel for you and will be hoping for the best for you.
You've gotten a lot of great advice already, so I will just add one point that I haven't seen made yet. I had bad quad results also and at first didn't want to do the amnio as I was afraid of the risk of it, however my doctor said something that really sank in and made me have the amnio. He said he just wanted to be the most prepared for her delivery that he could be. If we knew what we were facing before we delivered, he could have the best doctors in the delivery room to properly care for her. She however is perfect! There are soooo many women that have bad quad results that I wish they could somehow change the test so it is much more accurate. It is the scariest thing to hear that there might be something wrong with your baby and it causes so much stress. That alone cannot be good for the pregnancy.
Good luck and best wishes!
I don't have a child with Down's Syndrome, but my son is on the Autism Spectrum, so I have experience with a "special needs" child. Fortunately, he is on the mild end of the spectrum, with no substantial behavior or sleep issues, so in many ways we're very lucky. I would urge you not to panic, even if tests show Down's Syndrome. You can't know until the child's born what severity of symptoms/problems you will be facing, and all but perhaps the most profound degree of impairment can be substantially improved with early intervention, therapy, and a loving home environment. There are long established support groups that can help you as well.
hi, i had a similar thing, i was older, but had a 1 in 34 for downs. plus i have 2 other kids. the same awful discussions that you are talking about, i know. whatever decision you would or wouldnt make is up to you guys of course. but i will tell you that i googled and read and researched like crazy , i spoke to researchers, and i found sooooooooo many women with the same deal. those tests are evil, i could cry right now thinking about it, it made me so anxious and i feel like i was cheated out of my last pregnancy. anyway, my son doesnt have ds, he is 3 years old.... and it has happened to so many women. those tests are not diagnostic.try to relax, really. if you know that you are going for further testing, those tests are diagnostic. but the more you talk to people, the more you will find tons of women with the same story. try to relax :)
Hi - I had something similar. It was our 2nd pregnancy (our 1st was a m/c). I was 35. I can't remember the number specifically but I think it was around 1 of 50 chance. We, too, were very upset. But then I tried to put it in perspective. If someone told you that you had a 2% chance to win the lottery, would you put all your money into the lottery? Probably not. Yes, it is a higher risk than "normal", but it is still a really really small chance. We did not pursue any further testing. Our boy was born without any complications and is a "normal" 4-1/2 year old today. I know what you are experiencing is very hard. Try to focus on the positive and deal with whatever news you get the best you can. I'll be thinking positive thoughts for you.
I am sorry to hear about these results and based on my own experience, I can empathize completely with the stress that this causes. When pregnant with my first (I was 34) I got the quad screen which came back with elevated numbers (1 in 110 chance of a chromosomal problem or neural tube defect). I was not expecting that at all. At that point the next steps were ultrasound and possible amnio. We did the ultrasound and they were able to rule out neural tube defects but discovered that my son's kidneys were enlarged with could be an indicator of Down syndrome. We then had to decide how to proceed. We discussed this at length and determined that we would not terminate the pregnancy if the amnio came back positive and we weren't willing to take the risks involved in the amnio. My husband smartly pointed out that based on the numbers we had a less than 1% chance of anything being wrong. Those are good numbers (although you would like to see even less of a chance). In your case, you're looking at less than a 2% chance. I know from experience that you will worry through your entire pregnancy about this and even after the baby is born whether or not you do additional testing. I can't and won't tell you what to do because everyone has to make the decision that is right for them. All I can say is to really spend some time thinking about what you will do based on the results of the current tests or any additional tests. Once we made that decision, then we just left the rest up to God and fate and hoped and prayed for the best result. And we were blessed with a perfectly healthy baby boy.
I was told years ago that I was going to have a Down's Syndrome baby. Now of course there are more advanced techniques, but nevertheless out came my child who was definitely not Down's Syndrome. There were millions of doctors at this birth, like a circus, making sure and out came my son who was not. He can be cranky, but Definitely not Down's Syndrome. But let me tell you, I did my homework and was ready to have him no matter what. I now work with many Down's Syndrome children and they are the most precious, fun and in some cases stubborn, very active cool people. So whoever you have, ENJOY!!
Hi A.-First of all I am so sorry that you are having to go through this difficulty with your pregnancy. I have not been in your position but just wanted to see if anyone has referred you to speak with someone who does have a child with Down Syndrome. I work in Early Intervention so I know from the families that I have worked with that it was helpful to them. Send me a message if you would like some info on a few organizations you could contact.
Hi A..
I know what you are going through. I was told the same thing, but instead of downs, it was cystic fibrosis. I am a carrier, and my husband was then tested. Our son is 21 months old and perfectly healthy:)
I think you and your husband are doing all the right things. I'm sure your baby is going to be perfectly healthy, but if he/she does have downs, I have a friend who raves about Gigis house or Gigis place. It's somewhere in the northern suburbs i believe. I will keep your little one in my prayers and keep us posted.
S.
I know someone who had no indications for ds and gave birth to a ds baby, she gave it up for adoption. Out of fear during her second pregnancy she did an amnio just to be sure and ended up killing a healthy baby...just be sure you can live with the results of whatever you choose...no matter what is or isn't wrong with the baby, it's a life- you have seen that baby boppin around on your ultrasounds! I know you said you were pro choice, but what choice are you giving the child? I know this must be sooo scary, but like the others said that's why I don't do these tests, of my probably dozen friends this has happened to they have ALL been false positives causing tons of undo worry! Praying for you!!!
Hi A., what a scary place to find yourself in... I know because I've been there. My quad results showed a 1 in 43 chance that my baby had trisomy 18. They told me if the baby did have trisomy 18 the chances of me even delivering, let alone the baby surviving were slim. It was devastating. The four day wait to get the amnio was excruciating. I was sick to my stomach and a nonstop cryer the whole time, and then the results came back and he was FINE. Actually, he was perfect he IS perfect. Try not to think too much about it. Those blood tests are wrong all the time. Get the amnio so you can relieve your mind. My thoughts and prayers are with you :)
