Seeking Moms with Same Experience with Quad Screening

I would not get really worried tests can be wrong. I don't have a lot of answers but I can suggest another great webiste that was helpful to me thru a problem pregnancy and it whattoexpect.com It offers many great message boards for women in the same point in pregnancy, troubles w/ pregnancy and just all around support. Hope that helps!

I can't say my experience is exactly the same, but I'll share anyways. I had twins eight weeks ago and we had a false positive quad screen for downs syndrome. Because our twins shared the same placenta, we were high risk and had an ultrascreen with our perinatologist. My OBGYN never shared the quad test with me because the ultrascreens are (I guess) more accurate and the ultrascreen produced normal results. Needless to say, I stumbled across the quad results when I submitted paperwork to my HR office. I was pretty traumatized sorting through the differences of the tests and peeved to not learn of these results until I was 31 weeks along when it had been performed way earlier for testing of other levels. I literally spent the last month of my pregnancy worried sick. I think we were told they had a 1 in 150 chance to be born with Downs. Our girls are here completely healthy, but I understand your concerns. Although you don't like your perinatologists' personality, he or she may be able to give you valuable information. Just an FYI, I had a great experience with the perinatologists at Maternal Fetal Medicine at Riverside. We were there every two weeks so we got pretty familiar with the doctors. Good luck and please try not to worry. The screens are just that, a screen.

A.,

God never gives us more than we can handle.It may seem like it sometimes but there is a plan and a meaning for everything. You can not predict the future or the health of your new baby girl. Go have the ultrasound, keep a positive attitude and deal with the arrogant perinatologist.Take a deep breathe and relax, things are going to work out. Children are a blessing, you already know this and the new one, no matter what health issues she may or may not have will be a blessing as well.
Remember you are not alone in this journey, you have support and you have faith so keep your head up and keep thinking positive thoughts things will work out the way they are supposed too.
You will be in my thoughts and prayers..goodluck

I think a lot of women are in your place and don't realize that there isn't a test or procedure that a doctor wants to do that you can't say no to. They tend to use scare tactics to talk you in to it but you always have the right to say no.

SO, if you don't want to do another ultrasound, don't! If it won't change anything for you, there really is no reason. The one reason I can see is that if something were to be found, you could prepare for it ahead of time instead of having to deal with it all as you are recovering from giving birth.

Good Luck :)

hi, i know how you feel. i have two kids now but my first pregnancy i had a rough time with. my first ultra sound showed a highlighted bowel area. so they wanted a second ultra sound. and the dr i had to go to had horrible bed side manner. he said well you have a one in 2oo chance of him having downs syndrome or maybe ( i forget the other, but it was life treatening) and he said it like he was telling me the weather report. i bursted into tears. and he goes well i did not say it was going to happen. like i was not suppose to cry just because there was a chance. i left there broke out in hives and crying. i cried for the whole weekend could not even go to work. well i went back to my gyno. and she did the test to see if it could be the second life threatening one by blood. i did not have the jean so she said my baby could not have that.( which it would have been nice for the other dr to tell me that a blood test would let me know). well they wanted to do an amno for the second which i declined. i thought i am not going to do anything if he does have downs so why do i need to possibly hurt my baby if nothing will be done. but the next 4 months were rough. i wandered and looked at the sona gram over and over. and i said my baby does not look like he will have downs. well he did not. he was born great. well then i could tell he was a lot floppier than others. he started with low muscle tone. then well we found out he was deaf. and then he started having siezures. which is controlled with medicine. my baby is perfect in my eyes. i am not going to say it is easy sometimes. but everything in life that is hard ends up being worth it. we found out by a developemental pediatrician that i love. i caught a virus when i was in my first trimester called cmv. which causes the things that my son has. And in the end the dr doing the sonagram was completely wrong. not to say that this happens in every case. but it did in mine. i went through the how can i deal with this. i am not strong enough. well i am and i can. my son has showed me things that i never would have learned. if i could make him better i would. but i have learned that i have him for a reason. and when i see parents who get frusterated with there kids because they are typical kids doing things i say that is why i have him. he is not the typical he has some developemental issues . others could not deal with or have the patients. my ending here is you can do it. just believe in your gut on what to do. that baby is yours. and the more you learn about what is going on the better. it helps. good luck. by the way my child is almost five and he is the best thing that i have other than my other child. i would not trade him for nothing. he has a light in his eyes that brighten up anyroom he is in. he does not care one bit he is deaf. he is a happy loving boy. ( deafinatly all boy)

Any good doctor would encourage you get a second opinion, so don't be shy about asking for a referral. If your doctor is offended, that should be a red flag to you. But your baby's health (and your emotional health) is far more important than some doctor's ego, so please insist on a second opinion. Maybe you'll even like the 2nd opinion doctor better, and you can just transfer your files to him/her. They may not have any happier news for you, but sometimes the way they present the information makes all the difference.

Good luck to you. Your little girl is in my prayers.

You do not ever have to deal with a doctor that you are uncomfortable with! All you need to do is call ahead a request a different doctor. Even if your insurance requires you to call them ahead and change doctors...I would say it is totally worth it! You need to have faith in your doctor and how he deals with things.

On the other hand though...you may want to give him one more shot. I once saw a doctor for the first time and I thought that she was one of the most inconsiderate, unpersonable doctors that I had ever met. I gave her the benefit of the doubt and saw her ONE more time. Well, I think that I must have seen her (the first time) on one of the worst days of her life because she was SOOO incredible nice and thoughtful and had a great bedside manner from there on out! I am glad that I gave her a second chance!

Good luck but, just remember that YOU are in control of your health care and who takes charge of that!

A.,
Your question is one that I know many women have had, do I get the blood tests that show if my child "might possibly" have a birth defect. My husband is in medical school and explained to me that those tests are the cheapest way to screen for birth defects, however they are not very accurate, meaning they do them because they are cheap, they can show birth defects, however many other things can show up on them that are irrelevant. I have had many friends who were told their child would have down syndrome and they never had and amnio done so they just believed the first test. This caused them to have a very stressful pregnancy worrying if the baby would be all right and if they could handle taking care of a handicapped child. However the child was born without any problems and they spend many days worrying in vain.

However my mother had an amnio and found out with one of her children that she did have a baby with down syndrome. She said that this was also hard because not being able to see the baby or know how healthy she would be caused her to worry a lot. She is also against abortion and knew she would raise the baby, but obviously it's a worry. Once my sister Amy was born she instantly fell in love with her and knew she was meant for our family. It is a challenge at times but she feels bad she worried so much about it while she was expecting her.

From what my husband has told me chances are low that your first blood test is very accurate. However if you are going to worry for months I would suggest the amnio if you can afford it, often times insurance won't pay for it and I believe they can be almost $1000. Good luck, I hope things go well.

A.

Get a new doctor! What a jerk!
L. (41 yo mother of a 22 month old). Started late!!

ps- You sound wonderful. Don't let anyone take that away from you. Also,
I was a pediatric nurse for 14 years.. I hear ya!

Dear A.,
I am feeling terrible, with you. Let me tell you that I have a friend who went through what you are going through right now. Her hubb's a Dr. and so they got this screening. It came back that her baby would be a boy and appeared to have Down Syndrome. They were positive. She was already busy with her incredibly active two older boys. There was no way she'd abort so she prayed..we all prayed. THe baby was born perfectly healthy. No Down Syndrome or any other disabilities.
Fortunately, I hear this happens all the time. Please be encouraged. Pray G-d's best will for you and your husband. Sometimes His ways are higher than ours and He wants to bless us with children that others may consider a disability. He gives us everything we need and uses us to bless others with these gifts. Either way be encouraged and put your hand in His. Then walk.

I feel for you. My levels were off on my quad and other factors put us as "risk" of having a child with a defect. I don't remember what odds they gave me but it put us into a panic until we decided a few things.
1) What were our chances of having a healthy child? 1:125 = 99.2% chance of having a healthy child.
2) What were the odds that we would lose the child due to complications from the amnio? (A relative lost her daughter due to an amnio.) Would we want to risk it?
3) Would we terminate the pregnancy if the child wasn't going to be "perfect:? For us... No, no matter what the outcome was.
4) Would God give us a situation we could not handle?

Since then we have had a healthy little girl, the love of our lives, who is now 6 months old.

You know you are going to love and cherish this child no matter what - and you will need to hold that in your heart until you can hold her in your arms. At this point information is power - the more you know the better able you will be able to handle the situation when it is upon you. Go back for another ultrasound but also ask your OB for another specialist. You should definitely get a second opinion.

A.,
I never have all the screening, but we found out about a heart defect during an US with my 3rd (I'm mother of 4--7, 5, 3, and 4mos). We then had a fetal echocardiogram at Cinti Children's to get a better idea of the defect. I did not have an amnio or any genetic counseling, etc. When my daughter was born, we then found out she has down syndrome. WHAT A GIFT! Not just to our family, but to our whole community. And because of our Jenna, our lives are much more Christ-centered. That, too, has been a wonderful gift. We all must remember that God does not make mistakes, and these wonderful children (all children) are sent to us, each for a special purpose. And as far as the heart defect, my daughter had open heart surgery and now has a fixed heart with no more surgeries, and no restrictions.
Doctors(OBs) can be very negative, and truly do not know the facts when it comes to the potential of children born with disabilities (their job is over after the birth). So if it comes to be, seek real information--there is a ton of moms who would tell you about all the blessings!!!!!
God Bless you on your journey, M.

Hi A.,

My daughter turned 1 this past Valentine's Day & I had a horrifying experience with my Quad Screening too. My husband & I went to a specialist (who had a terrible bedside manner too). She did the ultra-sound & said our baby wouldn't have Downs Syndrome, like the test origianly showed. Our baby was supposidly missing another chromosone (sp?) which would mean I would give birth, she would live for a day or 2 and die. The specialist told me not to cry (it's hard not to when you're told your child is going to die), handed us the ultra-sound pictures, & told us to wait in the waiting room while she called our OBGYN. 1 1/2 hrs. later, she came out & said everything was OK & she had the due date wrong. I told my OBGYN how aweful the specialist was & he said he'd make sure if I had to ever go back, I'd get a different dr. I hope all goes well, I'll be thinking of you!

H. D.

You have already gotten a lot of great responses but I know when I was going through this, the more reassurance, the better so I thought I'd repond too. We also had 2 markers with our son (2 vessel cord and spot on his heart). We decided against the amnio - too risky - but did have another ultrasound so we would be more prepared if something was wrong. In the end, he was perfectly healthy. I know its hard but try not to worry too much. As for the doctor - get a new one. You want someone you're comfortable with. Good luck!

I've had a similar experience. Except in my daughters cause her femur was measuring small which they said is pecursor for Down Syndrome. I opted for the amnio test. I wanted to know if she had downs so I could prepare. If she didn't I wanted to be able to enjoy the rest of my pregnancy. Long story short she is was perfectly normal. She is now 5 yrs old and my pride and joy. I think that modern technology just gives a reason to be concerned when there no need to be. Go have your ultrasound done, you need to know either way, to prepare or to have peace of mind. I am sure it all will be fine in the end.

find another specialist!!! and those tests are not always correct. have faith and if she does have some defect or abnormality, she is still your daughter. God won't give us more than we can handle. I seen Dr. James Sumners in Indy. he was AWESOME and GREAT bedside manners! Vey Compassionate!
Keep me updated!

A.,

I know that you don't want an amnio, and I don't blame you, but you might want to consider it so that you may have a better idea of what you have ahead of you and be able to plan better. It may turn out that everything will be OK or it may just lay out what you have to look forward to and be able to have plenty of time to get adjusted to the future. It may give you some peace of mind so that the next 5 months aren't a big question mark. Just a thought. Good luck with this journey.

Dear A.,

Pre-screening tests have an EXTREMELY HIGH RATE of inaccuracy. They create anxiety during one of the most lovely times of your life: when you are nurturing and growing a new life inside of you! Amniocentesis tests are dangerous, inconclusive, and pose a potential risk of doing harm to your baby. I don't know why obstetrical practices impose these tests on women, as they are often more cruel (in terms of unnecessary worry on the part of the parents) than helpful. Particulary at 5 months.

I can look through my birth library for books referencing research supporting those statements, and further explaining the risk-benefit of screening tests. I know of MANY authors citing the evidence against such testing. If you're interested please contact me at the email id included below and I'll share book titles with you.

A. even the use of routine ultrasound tests is questionable, though standard practice in obstetrics. Much of the information (such as baby's weight and size) can be inacccurate. As a doula I can relay many times when ultrasound information was off. Keep in mind you can refuse any testing. You can also switch practitioners at any point in your pregnancy, if you feel the need now or later! It's your birth, know your options!

I'm so sorry you've had to endure this experience. My wish for you is to fill your pregnancy with light, love, and joy once again. I know you will do that.

Please consider hiring an experienced doula. She will provide you and your husband with helpful information so you can make informed decisions; she will support you emotionally during times of uncertainty; she will remind you of your body's innate ability to grow a healthy baby, and your baby's innate ability to grow, snuggle inside you, listen for your reassurance and love, and inititate his/her birth when the two of you begin your lovely dance of labor!

If you need help finding a doula in your area you can look at the DONA website www.DONA.org; you can contact me and I'll be happy to help ____@____.com; you can ask friends for referrals. But do hire a doula to help you through these tough decisions and to help you gather more information.

With bright blessings,
D.

So I know that this question is really old, but I thought I would respond just for the benefit of anyone who brings it up during a search, like I did. I am on my second pregnancy and have seen the perinatologists at Fairview with both pregnancies. What I have learned is this:

1: Their bedside manner is HORRIBLE. I mean awful. It is a crapshoot whether they will be kind or make you feel awful. But I have ben told that they are the best around.

2. The first visit is the worst visit.

3. They tend to order lots of ultrasounds and want to see you regularly, even if you are not at high risk. I have had to low risk pregnancies and one (hopefully two soon :) awesome baby and both times they have wanted to "watch" my progress just in case. Nothing was wrong. Everything they were worried about turned out to be nothing at all.

Hope this helps someone out at least a little bit. ;) Best of luck!

I was 37 when I finally got pregnant so I understand your concern. At my second ultrasound the doctor said I had placent previa,scared me a lot. Found out 6 weeks later everything was fine. I didn't have the amnio even though they encouraged it because of my age,because I knew for better or worse I wouldn't abort my baby. I did the blood test which was reassuring and I did go to all my(5) ultrasounds. I'm glad I did because it reassured me that my baby was developing okay. Relax! That's the best thing you can do for your baby. I would do the quad screening but not the amnio, I didn't like the risk of possible miscarriage. Find new doctors if possible(I liked Dr.Shah at Fairview)

A....I know exactly how your feeling right now. My son was diagnosed with a Congenital Heart Defect during my 20 week scan, my OB made me feel like my baby wasn't worth trying to save. He even discontinued my care, and referred me to in my opinion a much better DR....so he did me a favor. I went to the new Dr and they told me that my baby might not live, and they gave me 3 choices. By this time I was already 26 weeks along. My choices were 1. Terminate 2. Comfort care 3. Surgery .....now what do you think we chose? My son is now 4 months old and YES it has been a rocky road, but we made it through together. He is my miracle baby, and if you listen to what the DOCS think you should do then your baby girl has no chance of survival. Listen to your heart. I hope that things turn out ok for you and your family. If you ever need to talk you can email me here or @ ____@____.com

Hello, I am responding to your post as I had a similar experience. I see your in Lorain OH and I am not sure where that is but was wondering if your DR is at MVH? If so we may be talking about the same AWFUL DR??? Let me know!

Anyway when my daughter, who is now 5 and healthy, well when I was pregnant with her I had some terrible scares about her heart. The awful DR saw something on one of her scans and said she had something wrong with her heart. This was right before Christmas and we had scans every other day and about 3 weeks into the process another DR did the scan that day and couldn't find anything, so we came back two days later and still nothing. Was there something wrong ever? I will never know but she is fine now. The stress was terrible and when I asked him (the mean DR) would she be fine, would she die. He nastly told me he was not a fortune teller and could not quess what would happen. So when I delivered her about two weeks after all this was done we found out she was fine, she has never had any problems with her heart, none!

We were also told that she may be a dwarf, near the end of my pregnancy and so that was stressful but when we were told it never even occured to us that my husbands side of the family is very petite and my mother in law is only 4'11. So we stressed about that for nothing as well.

God doesn't give you any more than you can handle so I would not abort this child. I am not saying there is nothing wrong but go with your instincts, they are more sound than you will ever know!

After my pregancy and I was given a survey to fill out about my prenatal care I gave them an ear full about my DR.

Curious to see if we had the same DR???

I will pray for you and your child.

Hi A.,
I too had a protein test come back higher than normal for my second child. His due date was in April and they told me in December that he would probably be born with spina bifida or Down Syndrome. To say the least, I was very very upset. On top of it all, I was called at work. I was told with such an air of indifference too. (seemed that way to me) I guess if the professionals got all wrapped up in every case they had, it would be really hard to do their job. I'm sure there has to be some sort of detachment on their part eventhough it seems cold to the ones involved.
They wanted to do an amnio, but I didn't want them messing with his environment, so they just did an ultrasound. (That's when I found out Jacob was a boy.) Like you, abortion was out of the question. We were just going to love him and take care of him. (He's almost 10 now!) I am very glad that I decided against the amnio. It was a "false positive". Nothing is wrong with Jacob. He's a very active, healthy little boy.
God bless you and your family. I pray everything will work out great for you! Hang in there, A.. They aren't always right!

I had a similar experience with my third child. On a routine ultrasound they found a spot on her heart and two choroid plexus cysts on her brain. They did an level 3 ultrasound and everything appeared to be OK but they of course cannot guarantee there is not going to be an abnormality. I opted not to have the amnio since I would not abort and there was a relatively high rate of miscarriage. My daughter was born perfectly healthy and wonderful. The advancements in medicine and prenatal tests are wonderful but sometimes they cause a lot of unnecessary worry. Good luck and try to relax.

Hi A.,
I had a quad screen done with my first pregnancy, they said the baby had down syndrome. They told me good luck you have 2 options, keep it or abort it. That wasn't a option in my book. They told me it could also be wrong that the tests has a high false positive, especialy if it is done at the wrong time?. They also told me I would have a rather large baby. They ran the test a month later and everything was okay! Come to find out they were wrong about both, I had a healthy 6 lb, 4 oz baby girl who is perfectly normal and very smart! Those test just cause worry that is not necessary! I swithced doctors for my last two pregancy, and didn't have the quad done on them...didn't want to have that worry again. Hang in there and keep the Faith. I'll be praying for you and you family. Keep you head up.... God has blessed you with two boys and soon to be a beautiful baby girl.

This is such a personal decision and only you can do what is right for you.

Personally, I refused the quad screening because I have heard of so many false positives. My mother's friend had a false positive years ago - they actually encouraged her to abort the baby because the protein was so high. She refused to have an abortion, but her decision caused huge problems in her marriage because her husband didn't agree with her decision. She had the baby and her "baby" is now a brilliant, straight A, honor roll 14 year old that has gone on to many competitions for writing at the national level.

While I realize that your beliefs may differ, for me, the only choice was to put things in God's hands. I didn't have the screen and my little girl is completely normal. I don't regret refusing it one bit, even though the Dr's office pushed it on me (of course, we also have to consider the money that they make with each of these screenings as well).

Good luck with your decision. All I can do is tell you what I did.

A.,
Does this guy have a partner you could see instead, or cetified nurse practioner?? If he makes you uncomfortable say something to him in person, let him know youre offended by him. You are paying for the office visits, ask him if he wants you to take your business elsewhere, but usually confronting them helps them realize they are not GOD!! I would also ask what kind of defect or abnormality, get all the information you can. She's YOUR baby, your concern. Plus your baby is still in the very early stages of development,blemishes and imperfections have a way of healing themselves.Pray daily and keep your faith.
Keep us informed!!
God bless you and baby girl,
R.

Do you have the option of going to a different office? If not, I find it hard to believe that there is only one Dr. in this office. When you call to schedule, you can just ask to be scheduled with a different Dr. I am really sorry you have had such a terrible experience. You may ask your main OB doctor if your baby's heart condition warrents a cardiac echo at children's hospital. That may help give you a better idea of how severe the problem is. Hope things improve for you.

A... I am so sorry that you are scared.. and I can so sympathise. But here is what I think.. And this could end up a bit long.. but here goes: During my 2nd pregnancy.. my son had pre-term labor.. they stopped it, for the upcoming couple weeks, I had to be monitored everyday, they said his oxygen level was low.. they said there could of been complications from pre-term labor, they said he could be born mentally retarded.. or health issues because of low oxygen levels.. I prayed alot, cried alot, and delivered a very healthy little boy, who is 4 now.. and is very bright ! my 3rd preg .. 6 weeks preg I went to a dr visit... they did a sonogram and told me she thought I had ovarian cancer, she sent me for blood work and to check for cancer cells, my next visit 2 weeks later she said that surgery was of the utmost importance, tho she first referred me to a high risk dr, I went to see him, he said he felt like her surgery was important.. tho there was a 70 percent chance I could lose the baby within the first 7 days after the surgery ( I was 4 months preg)., I did the surgery, I was scared, I prayed, I cried.. and I never bought one thing for the baby because I was afraid I was going to lose her because after my surgery they gave me morphine, they sent me home from the hospital with percosets for pain.. I couldnt see how narcotics could be ok for a preg surely there would be something wrong .. I delivered a beautiful healthy baby girl. One of my girlfriends was over 30 when she had her second baby.. they told her from her blood test that they thought her little girl had downed syndrome, they wanted her to have an amino.. she said no she was having this baby no matter what so that wasnt neccessary. She delivered a beautiful healthy baby girl with no downs syn. Heres the flip side.. my sister was preg, no one told her there was a problem, everything was going to be fine they said.. she delivered a baby boy..they sent her home from the hospital with her son, and he passed away at 6 weeks, from a heart defect no one knew was there. So no matter what they say.. you are taking a chance, even when you think your baby is healthy, there could be something wrong.. So heres my opinion.. Get a second opinion.. Trust in your faith.. If you think getting an amino would help ease the anxiety then do it.. it could help you prepare for what might be ahead.. if you dont think it will help then dont.. When you have a child.. anything can happen at any time.. and if something does.. it doesnt mean you love them any less. Your not going to love your daughter any less, if shes perfectly healthy or if shes not, My son is 4, and he has had 3 seizures in the last 6 months,, they dont know what from ? It doesnt mean I love him any less, if some time down the road they tell me he has epilepsy. Do what feels right to you. If you need to talk.. please dont hesitate to write.