17 answers

My Ultrasound Shows DS in My Baby

Hi
Im completly destroy in tears. My pain its too much to handle and I know many of you mom's out there understand me. I went to get an ultrasound and I got the terrible news; my babe appears to have a black shadow in the back of the head or neck. Which is suppose to mean that he or she might have DS. It makes me sad and not because of me, its because of my baby's life in a future or even on my belly, since i heard there's a lot of cases they die at a early age or before they even born. Please help me with some advices on what to do, and also if anyone has an idea on how much an amnio test will cost us, because my insurance doesnt cover it. thanks.

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So What Happened?™

Hey everyone!
Well I am happily 22 weeks pregnant now, Im having a girl. What my baby had is called cystic hygroma. they first saw it when i was about 10 or 11 weeks. I decided to go for the cvs and pray to the Lord nothing would happen. The results came back normal meaning she's not coming with any genetic problems. The specialist did say that there's a chance that during the test; a mother contamination. That happens when the results are yours not you baby's. Anyways...the cystic hygroma was no where to be found by the 16 week. I dont know what it was or why that happens, but I believe that praying is a powerful thing. i believe in God and I know he listened to all my family & friends prayers. So my point is to all of you that are going to the same situation i just want to say pray to God and believe in him. There's a reason why he's putting you thrugh this. It will make you grow and become a stronger individual. Offer something that you think it would be great to change in name of your unborn child. Secondly...dont go by only one doctor's opinion, search more; I went to three different doctors and always remember something; they're not your relatives they want to make business. And they will make you take every single test they could possible relate to it to get more money from you. I experience this. One of the Doctors did 4 blood tests on me and I never heard results from it I stopped going to him because of that reason. It was supposed to be the one call sequential screening or something like that. stay positive and hope for the best, prepare for the worst. Us women have the joy to carry our child on our belly and bond with them like no other. God bless.

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A., I'm so sorry you're going through this stress right now. Pregnancy is not a good time to be stressed. That being said, drs are wrong soooooooooo often. I've read millions of stories where patients were killed, died, whatever b/c of incorrect diagnosis. I recently read a story about a family being told a woman (their mother) was dead and guess what? The dr was wrong.
When I was pregnant I was told my child had a 1 in 30 chance of having ds. THey then tried to get me to have a stage 2 ultrasound (I wasn't going to have any kind of ultrasound no less stage 2) and an amnio ASAP. Well, amnios can cause miscarriage! So I went to my midwife, she did the test again and guess what??? it was a 1 in 3500 chance! My daughter is now a healthy child who is not only smart but advanced by several years. I had a lot of stress and lost sleep because of the incompetence of drs. I'm not saying all drs are jerks.... emergency care is top but otherwise, stay clear.
I didn't go back to the dr, stayed with my midwife and had a beautiful birth. I can give you my midwife's info if you're interested.
Keep calm and if need be, test again!

In peace

5 moms found this helpful

I'm not clear on what DS is. Down's Syndrome? That I know a lot about, so get back to me.
Blessings, S.

1 mom found this helpful

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A., I'm so sorry you're going through this stress right now. Pregnancy is not a good time to be stressed. That being said, drs are wrong soooooooooo often. I've read millions of stories where patients were killed, died, whatever b/c of incorrect diagnosis. I recently read a story about a family being told a woman (their mother) was dead and guess what? The dr was wrong.
When I was pregnant I was told my child had a 1 in 30 chance of having ds. THey then tried to get me to have a stage 2 ultrasound (I wasn't going to have any kind of ultrasound no less stage 2) and an amnio ASAP. Well, amnios can cause miscarriage! So I went to my midwife, she did the test again and guess what??? it was a 1 in 3500 chance! My daughter is now a healthy child who is not only smart but advanced by several years. I had a lot of stress and lost sleep because of the incompetence of drs. I'm not saying all drs are jerks.... emergency care is top but otherwise, stay clear.
I didn't go back to the dr, stayed with my midwife and had a beautiful birth. I can give you my midwife's info if you're interested.
Keep calm and if need be, test again!

In peace

5 moms found this helpful

I'm sorry you are going through this. In the state of California, if a woman tests positive for Downs or Trisomy 18 the state pays for the amnio or CVS. If your first trimester screening blood work came back positive along with the ultrasound results maybe Florida does the same thing? Also, with these new results, maybe your insurance will cover the test now. I would have the doctors office call and relay why they think you need an Amnio. Also, there are probably many non profit organizations that offer tests on a sliding scale. Planned Parenthood is the only one that comes to mind but I'm sure there are many woman's clinics that should be able to assist you. Asking your Doctor for a payment plan is also an excellent idea that some of the moms suggested. Again, I'm very sorry you are going through this but chances are very good that your baby is just fine. You'll be in my thoughts and prayers.

5 moms found this helpful

Before going the amnio route get a level 2 ultrasound. This is where they will look for other markers for Downs like white spots on the intestines, length of leg bones, nuccal fold, and a couple of other things. I would think it would have to be cheaper than amnio. But like someone else said, contact your insurance. They may pay for it now because of the possible findings on your routine ultrasound. Talk with the insurance rep at your doctor's office.

Many, many people with Downs now live long and happy lives. Downs is not a death sentence. Yes, babies with Downs are more work and more doctor visits but they are still sons and daughters who bring joy to their parents and siblings. Here is a site with great info for you:

http://www.ndss.org/

But do know that the tech/doc could be wrong. You said it "appears to have a shadow". That is def not a definitive diagnosis. Get the amnio or level 2 ultrasound so you will know what you are dealing with and what help your baby may or may not need.

Best to you.

5 moms found this helpful

My Sister has DS and is 38 years old. She has lived a very happy and healthy life. Graduated High School, has had jobs, friends and a boyfriend or two. She is forever innocent and loving. Does not have the jaded sense the rest of the world has.
If you are lucky enough to have a child with DS you will be blessed for life! It is not a curse but a blessing!
AND the Drs could be wrong. I have met several Moms that were warned their child could have DS and they were born perfectly average. (not normal as who is to say what normal is)
Breathe deep and know we cannot control our world but accept it and love what comes our way!!

4 moms found this helpful

The only way to know for sure is to have amniocentisis. I suggest you do this as soon as possible in order to have a definite answer. I'm sorry you're upset, but it's impossible to tell anything for sure with just an ultrasound. Have the amnio and go from there.IF your baby is a Down's baby, it will depend on the severity as to whether or not he/she has health problems, heart problems, etc. Some Down's people live quite a long time -I know one person in his 40s. If you find that you are having a Down's baby, do a lot of research and reading and find a support group in your area for parents of children with Down's Syndrome, but make sure you ARE having a Down's child before you worry anymore.

About the insurance and amnio -are you over 35? Are you absolutely SURE they won't cover it if you are either over 35 or get a testing result like this? I would call them directly, with the doctor's observance spelled out in front of me and ask. If they really won't cover it, ask your doctor and they will probably be willing to work out a payment plan if you need it.

3 moms found this helpful

Have you seen your OB after your US??The sono's aren't 100% they can be wrong or right but yes more testing is needed..Call you insurance company on the amnio make sure they are correct that amnio's aren't covered if they are @ what percent.Sorry but we can't help with insurance issues..
My heart aches to hear this news about your unborn child it brings back memories on my 3 pregnancies now with 3 kiddos the worries still don't stop.I hope that everything goes well for you remember to ask questions to those who are caring for you & baby knowedge is power.You will get through this..

3 moms found this helpful

Hi A.,

I'm sorry you have had upsetting news. First, get the amnio so that you will know for sure and can be prepared. I had CVS which is similar and it ran around $2k - check with the doctor and ask if you can do payments AND get a cost reduction. Also call the insurance co and see if they will cover it since you may now be high risk per the ultrasound. If they say no, have the doctor call too.

Secondly, if your child does have DS, know that they are joyful children. I teach technology and library and have a class of MH students including Downs. They are the sweetest, most loving children. There are also many resources through your county available to you, another reason to find out early so you can look into it. My prayers will be with you.

3 moms found this helpful

So sorry you are going through this. First of all - "a black shadow" is not for sure your baby has Down's Syndrome. I would think that if you have findings on ultrasound that insurance would pick up the cost of the amnio. (I live in California, so i know nothing about health care in Florida) Call your doctor's office back and ask? I am sure you were very upset when they told you about this. Most likely you weren't able to absorb all they told you which is very normal. I am sure you have other questions besides an amnio. Write down your questions, have someone go with you and
take notes. The outcome for Down's is very variable. My uncle with Down's is 61 years old. My grandparents were told he wouldn't live past 20. You need more information. My thoughts and prayers are with you.

3 moms found this helpful

I would call your dr to find out the cost to see what you are looking at dollars wise. There are other tests they can do to find out what the odds are of your son having DS are. I got the scary call that my son had a one in 5 chance of having Trisomy 18. Then after scheduling the amnio I was told it was a mix up. I understand they saw signs of it in the ultrasound, however there are other tests they can do to see the odds and you should see a specialist to have it looked at again. Please do not research or look at information until you know better, that's not good it could cause unneeded stress. Easier said than done, I know but gather information about what they saw then make a game plan. You will do well as long as you stay calm and think out all of your actions and stay as free of stress as possible.

2 moms found this helpful

Prayers. No matter what, you will be so happy with that child

2 moms found this helpful

I can't help you with the cost of an amnio, but I wanted to tell you I had a similar issue....

When I was pregnant with my oldest I had an ultrasound and the doctor told me he has a vacuum in his brain which is a sign of retardation.....

I was devastated but made the request to be screened by a specialist too....

Thank God I got in with the specialist just 2 hours later and he said "Are they stupid ??? His brain looks just fine....no spots, vacuums whatsoever....

Today he's above average in every subject in school.....

Get a second opinion !!!!

Ultrasounds are great, but they are not always accurate !!!!

I wish you the best and want to tell you the kids with DS I know are absolutely great, adorable and sweet....and I know a lot of them who are in their 40's !!!!!

2 moms found this helpful

I cant help you with the insurance issue but what kind of ultra sound did you have. If you didnt get one get a 3d ultra sound for more clarification on the spot. I chose not to do the amnio because I would love the baby either way. down kids are really cool and since I was blessed with a healthy child not a downs child (which could have easily happened since I was over 40) I pay more attention to downs kids cause my outlook now is that could have been my kid. I will pray for you and get a 3d which is what I had. my doc told me I wouldnt have the baby till my due date and the 3d doc said I need not to make another appt cause I would be carrying the baby and he was right and my doc was wrong:) docs can be wrong they are human. get a second opinion before you panic.

1 mom found this helpful

How far along are you? There are other markers that when put together give you a complete picture as to if your baby is Downs. I work with DS babies and some have more problems then others. Some have hearing aids, some have glasses, some have heart conditions and orthopedic problems. It is a big decision because these special little guys need SO MUCH intervention like speech, OT, PT and behavioral therapies that will backrupt even the richest of people. I am not sugar coating anything. It is a lifelong commitment for you and your partner emotionally, financially, energy wise and in every way becasue they usually don't grow up, move out and start their own lives. The parents will always be caretakers. Please weigh your decisions carefully. I know many young woman who have had DS children. It is not just over 35 anymore. They are sweet and cute when they are little but it is hard work forever. I love the kids I work with because they are already here but I don't know if I personally would have chosen the same. You can contact Gold Coast Down Syndrome organization to see if they have people to council you. They are very nice people. Good luck and don't stress.

1 mom found this helpful

I'm not clear on what DS is. Down's Syndrome? That I know a lot about, so get back to me.
Blessings, S.

1 mom found this helpful

Certainly you need more testing. If it does come out that the child will have DS, you have to decide if you want to take care of a retarded child for the rest of your life, and then wonder who is going to take that responsibility after you're gone. Are you up to caring for a child who learns slow, has socially inappropriate behaviors, speech problems, behavior problems, possible heart or other internal organ abnormalities. Do you want to spend the rest of your life caring for a retarded adult who needs daily care? Yes, DS are cute kids, but so are normal children. Certainly you need to think long and hard before deciding (if further tests show abnormality) whether you want to give birth to a disabled child, or abort and try again for a mentally and physically healthy child.

Children are a blessing no matter what and they are hard work whether they are specially-abled or "normal". (who defines that anyway?) ...

I was 18 and pregnant when i was also told a test showed my baby had a very high chance of having Down's Syndrome. I declined further testing because, as you've stated, it's not the child's fault ... I would raise the baby regardless of their challenges, so I just prayed about the matter.

In the end, my daughter was born without complications and no sign of Down's or any other issue. But, I have known friends of different ages who have had children with Down's and honestly it is much different today than it was 20-30 years ago. Some of their kids are mainstreamed in elem school and then as they get older, they move into special classes, but they read, go to school, have jobs, go to ballet, play sports, and more. Yes, there are medical issues that accompany each of them, but my "normal" kids have medical issues too!

I will pray for strength for you and your partner and for the baby's health. God will guide you on your journey of parenting ... :)

Ok, I'm sorry that you received possibly bad news, and I hope that everything turns out ok for you. I have been there, believe me. This is going to be long - but I know that you will gain from my insight and experiences - other's have. I'll tell you some things that maybe others won't.
First - the best advice that someone gave me was ....get Pregnancy Medicaid. It will pay for EVERYTHING pregnancy , prenatal, postnatal and the baby when it is born. It is guaranteed (I think) for all pregnant moms in FL regardless of income, insurance etc..
Second - try not to stress - it's not good for you, or the baby.
I had my first ultrasound simply to measure the baby and determine how far along I was so that the "quad screen blood test" could be administered during the 18-22 week, and I didn't know how pregnant I was. (Not a good record keeper - of my cycle) At that first ultrasound, I was found to be carrying 2 babies and was told that one didn't have a heartbeat (9weeks), and the other (13 weeks) had a tumor in her abdomen the size of her head! The midwife that I was going to referred me to a specialist in Lakeland that I HATED for a million and one reasons. I won't get into that right now - but he was awful. I asked the midwife to find me another Dr. that first of all - wasn't in a practice as large as the "specialist" because he had 8 partners, he was the only "high risk" guy, but you have to see all 9 and deliver with whomever is on call. Not for me. I refused to be part of an "assembly line", didn't want to see 9 different people and have to constantly be bringing them up to date on the findings of the previous visits etc... I think that anyone who accepts this kind of health care is promoting this kind of health care and making it acceptable for them to treat patients this way. Not my gig - so I searched on. Finally - my husband ran into someone here in Winter Haven that he knew who's wife was pregnant and had been to this so called "expert" in Lakeland - he said the guy was such a jerk that he wanted to punch him, but that now they go to the "Mac Daddy Dr. in Orlando who is FANTASTIC". My best friend in Naples called her Dr. and asked if I should come down there - he said "no - go to this guy in Orlando that's where I send ALL of my high risk patients". I called for an appointment and was told that he doesn't see patients on a regular basis - that you have to see one of the regular OBs there and if they want they will bring him in to consult. Since I had received recommendations for this guy from Naples AND Winter Haven, I thought that I would do whatever it took to get in there! I asked the phone person if she was a patient in that office and if so - who does she see? She told me she indeed was a patient and that she sees Dr. Jeannie McWhorter - so I told her that's who I wanted to see. At my first appointment Dr. McWhorter spent about 45 minutes with me. She was so kind, and patient and caring, and upbeat. She took me by the hand to the ultrasound tech, and sat and watched some of the pictures while rubbing my arm and holding my hand! She told the ultrasound tech - to keep me there, that the perinatologist (sp?) Dr. Carlin was either in the building or across the street at the hospital, and that she was going to go get him. She came back with this guy I couldn't get an appointment with and he spent 45 + minutes with me! When Dr. McWhorter left the room - he pointed at the door and said "you are in excellent hands, she graduated at the top of her class and was resident of the year for the state of FL". I already knew that I was in the right place! I still go to Dr McWhorter - even though I live 45 - 60 minutes away - because I think that she is that great. There are no Dr.s at that hospital and healthcare system that graduated from med school with a D- trust me.....they are all A+ top flight geniuses as far as I'm concerned! Ok...the perinatologist Dr. Carlin really really wanted me to have an amnio. I was really really scared of it because I'm a freak about needles and I thought that I would jump or flinch and something bad might happen. He wanted to do the amnio to look for Down Syndrome. I didn't think that we would terminate the pregnancy based on that diagnosis, so I wasn't sure. What the Dr. said - was that during the course of the pregnancy there is is different protocol for things that might come up -and the deciding factor about how to handle certain things would be if it was a down syndrome baby or not. He almost had me at that.....BUT... #1 - in one of my ultrasounds, that baby held up her hand and had her fingers outstretched, and the Dr. told me that was a good sign that it wasn't "trisomy 18" (sp?) a severe form of Down Syndrome, that "trisomy 18" babies have clenched fists usually. I pushed for the quad screen blood test, and it was taken. Dr. McWhorter called me with the results and was amazed! She told me when they took the test - not to worry that they come back "false +" MORE THAN 50% of the time - and because I had a twin (demise) pregnancy and my age (40) that mine would most likely be "+" but that not to get too excited because it's not the definitive test. My own results came back something crazy like a 1 / 4,0000 chance of one problem and a 1 / 7,000 chance of another problem. (they were testing for neural tube defects, and down syndrome). Anyway - I had done my research, and with an amnio I found that you have a 1 / 40 chance of a spontaneous miscarriage - so I chose not to have the amnio since my quad screen results were in my favor. I had to meet with my regular OB, 2 different perinatologists, and a genetic counselor over the course of my pregnancy. They were all fantastic, very compassionate and caring and informative. During the course of my pregnancy -it was confirmed that the one baby definitely didn't have a heartbeat, but they monitored the other baby very closely watching that growth in her abdomen. I was told that if it grew it could interfere with the development of her skeleton & organs etc.. so they were measuring it every couple of weeks. In December of my pregnancy - she developed a tumor in her brain! I was devastated and sick with worry. In my January appointment - VIOLA!......they were both gone! GONE!!!! The ultrasound tech and perinatologist could hardly conceal the surprise in their voices. My babies were delivered in April, and my daughter is fine. The hospital did ultrasounds on her belly and couldn't find anything! Today she is a healthy, active 6 year old in first grade and is one of the top readers in her class!
I hope that all of your worry to this time ends up being for nothing, but if your baby truly does have down syndrome, remember - every child is a gift. Many people say that their lives are enriched beyond belief from having a down syndrome child, and God will not give you more than you can handle. Good luck!
If you want to travel a bit to Orlando - Arnold Palmer Hospital is one of the top 3 in the country, and Dr. McWhorter is AMAZING. ###-###-#### is the # at her office. Also - now Arnold Palmer is the children's hospital, and Winnie Palmer has opened across the street and is for Women and babies. Dr. McWhorter's office is walking distance to both!

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