Unhealty Baby in Uterus

Just seeing the title, I wanted to send you this link.
Please go to http://audreycaroline.blogspot.com This is an amazing story of faith with an unhealthy baby growing inside her.

What devestating news to get and have to wait the weekend to find out anything! A normal heart will have 2 atria and 2 ventricles. Sometimes with downs kids, there will be a hole in between the 2 atria and another one in between the 2 ventricles. It's called an endocardial cushion defect and is the most common heart defect for them to have. There are also a couple of others that effect downs kids called tetralogy of fallot and hypoplastic left heart syndrome, in case you want to google those.
I hope this helps you although they have probably already been to the doctor by now.

Hi P.. How wonderful that you are looking into this. I am an early childhood special education teacher and I work with little babies with Down syndrome quite often. Like the other response, the ultrasound may have been read incorrectly. There are also other "signs" of Down syndrome besides the heart defect. The baby may have a "thicker" neck or the folds in the neck would be atypical...The eyes would also be more closely set and the fingers shorter...Their ear canals would also be very small..Of course, these things are not always detectible through an ultrasound, but an amnio test would indicate for sure if Down syndrome is present. Even if it is, I just want to tell you how beautiful these children are! While some do have severe medical issues, many are also very healthy in general. They are honestly the happiest and easy going babies and can bring so much love to the world! Good luck to you and your family and I hope it all works out!

Hi there,
I know this is a very scary time for your brother and SIL, but it is important to find out information. Knowledge can help so much. Unfortunately a lot of the info regarding Down syndrome is not always positive. I have a nine year son with Down syndrome and there are some incredibly wonderful aspects that I have gotten to experience raising him. 50% of children born with DS have heart issues. But they can really vary. My son had 2 holes in his heart when he was born, we were lucky enough that they closed on their own. There are so many parents out there she can hook up with to help her along the way. There are usually local DS groups where she can start. It helped me so much when we first found out to talk with another parent. They instinctively understand without the parent having to explain, it is a comfort like no other. People can be very supportive, but talking with someone who KNOWS really relieves the parent of having to explain or comfort someone else. I remember feeling like an educator of things I myself didn't totally understand when he was first born. Parents, friends, and other family members what answers just as much as we do. Please feel free to email me @ ____@____.com. I can give you more specific information. What state does she live in? There are also some forums on the web that can be helpful and inspiring. The best thing they can do now is find some hope. The heart issue is very scary. But the piece about having a child with Down syndrome is truly a blessing, there is lots of hope she can find in that. Please, as her SIL, stay in the congratulations mode. She is having a baby! This is still a beautiful gift! This child will need her love and understanding, she will do that. But you can help by showing her the same. Yes, there will be a grief period, we all visit that place. But living there won't help anyone, especially the baby. Find love and hope. I will pray for all of you. It is a scary time right now. Hopefully , one day you can all look back that you made it through and feel more love than you thought you would. Bless each of you.
D.

my sister was born with down syndrome in 1977. times have certainly changed! life expectancy has gone from 20 to over 55 years old now. and they can go thru school and do so much more now. there is a test called amniocentesis that can determine down syndrome while still pregnant. it takes a sample from the amniotic fluid not from the baby so is quite safe. it can also test for other things. the heart problem can be a number of different reasons so i would check everything out with multiple professional opinions before freaking out too much (also not good for a baby). there are certain bone structures,etc that are common with down's so maybe the dr. saw that too. best of luck whatever happens. just know that there are many more resources today that can help people with down's live a very full life. and help the parents to deal with it all.

P.--I only have time for a quick response at the moment but I just wanted to reply with a brief comment. My daughter who will be 3 in August has Down Syndrome. She was my second child and I had her when I was 32. We did not know ahead of time though she was small in utero. She has only a very minor heart problem-- that does not require heart surgery though we may do a shunt at some point. All of that aside our daughter is the most incredible and beautiful person. She is walking, signing and talking, and loves playing with her friends and family. She is healthy adventurous and determined. I could go on and on but I have to put my son to sleep -- there are many resources in communities (birth to 3 program, Down Syndrome support groups...)and if you would like at some point I could pass along the titles of wonderful books that are very positive and resourceful. Finally, if they are curious and want to talk or meet with some families with children who have DS that could happen as well. I hope this helps a little and I would be more than happy to communicate more if you would like. E.

We had a similar experience with our first child and 15 years ago did give birth to a child with very severe disabilities. I say 15 years ago as her birthday is this week. Are there challenges? Yes! Would I do anything differently now as compared to my choices then? No! Please let me know how I can help your family get through this and thank you! for being so supportive.

The only way to confirm Down Syndrome is through amniocentesis (sp) which is a procedure that must be done by a specialist. Caution, emotionally your sister may not be ready to hear this....

I'm sorry I don't have any information to help you, but wanted to let you know I'm keeping your family in my prayers.
S.

I am sure your brother and SIL are going through a difficult time. My sister had a son that was born with half a heart as well (Hypoplastic Left Heart Syndrome). This is a very serious condition requiring extensive surgery. Though some children undergo the series of surgeries and live, my nephew died at 11 weeks old. As you can imagine, the entire experience was very very difficult. I pray that this is not the case for your family. The 20 week ultrasounds are not as detailed as the one the specialist will do. Both of my babies had fetal echoes because heart defects run in my family. I was also born with a more minor heart defect requiring surgery. The specialists will be able to give your family much more information, regular doctors just can't help as much in this case. There are also some new surgeries that can be done before birth that can work very well. Good luck with all of this, I am sure you are all quite worried. If your brother and SIL would like to talk with someone who has been through this, I am sure my sister would love to speak with them. She knows how they feel. E-mail me if you'd like. ____@____.com You will be in my prayers. A.

P., this subjuect hits close to home for me... I now have 2 healthy children and a stepson. My first pregnancy however did not turn out well. I will share my story, not to scare you, but to inform you, I had my 20 week US and an Alpha Fetal Protien Test (AFP) done. the test results were 1 in 47 that my baby had DS. And the US showed signs of DS as well. I was sent to IA City for a level 2 US. More indepth and with someone who speciialized in birth defects and genetic diseases. They preformed and amniocentesis. to confirm the DNA make up of my child, those results were that instead of 2 #13 chromosomes, she had 3. Trisomy 13 is the official name for it. If she were to live to term, there was a 90 % chance she would die within a year. I could let God have his hand or terminate my pregnancy. In Iowa you cannot terminate a pregnancy after 24 weeks. I was 23 weeks when the results came back, The amnio takes 2 weeks, I did someting I NEVER thought I would do, and am still 3 years later not sure was the right thing.. I terminated my prgnancy, deep down I think she was already gone before I went to the hospital though.. Please don't judge me by this. I have my own regrets. My second pregnancy went well i had a helathy baby boy!! My third pregnany. Again I had the AFP test done those results again came back abnormal. 1 in 57 chance of DS. I was scared out of my mind... Anyway another level 2 US in IA City and amnio everything was fine. I have had the us come out bad 2 times and once everything was FINE!! There is a test that can be done along with the amnio that takes 24 hours for the results as opposed to the 2 week amnio results. It is called a FISH test. It helped to put my mind at ease with my 3rd pregnancy. If there is ANYTHING I can do for your family pleasse let me know. Even if it is just to talk to you or you SIL I will gladly do it. Sorry this has gotten to long.

I will say a prayer. mm

When I was 20 weeks pregnant with my 3rd baby, I had a test that came back showing there was "possibly" something wrong with the baby. The doctor came in and talked to me and my husband, asking what we wanted to do - essentially asking if we would like to continue or abort. Believing that God was in control we prayed and trusted that He knew what was best. We opted to have an amniocentesis done so we could prepare ourselves for what might be in store. The test came back showing that the baby was fine and today we have a normal, healthy 11 year old daughter. I know it doesn't always turn out that way, but I do believe that prayer might not change the circumstance, but it can prepare us for the situation that lies ahead.

Tell her to have the alpha fetal protein test. It is definitive and will tell her for sure if there is downs syndrome etc.
Also, a physician should read her ultra sound - not just the tech. I know some are quite skilled and have a lot of experience, but it was not the tech's place to give that kind of information to expecting parents.

I know of a little girl who has both Downs and 2 chambers in her heart. She was born the same day as my son. She is now 2 years old and is doing wonderfully! She did spend some time in the NICU and had some surgery, but she is a delightful girl.

Hopefully the specialist will be able to get more information to relieve your brother's fears.

I agree that ultrasounds are not accurate - the doc's told my friend she was having a girl and she had an almost 11 pound BOY!

I had a ultra sound done and was told they couldn't find the baby, so they sent me across town to a more experianced doctor, still no baby I was told this was a miscarriage go home and let my body do it's thing.

Totally grossed out I had a dead baby inside of me I was a basket case. Two weeks where nothing happend I went to another doctor they did a ultrasound and were like ...um why are you here again and I was like oh I miscarried and never expelled the baby, or anything and she looked at me like I was nuts and goes there is your baby right there and there is the heartbeat. I was like WHAT? My daughter is now 6.5 years old.

I am now pregnant with my second baby and I had a ultrasound last week. I say I'm 9 weeks pregnant the ultrasound says 8 weeks. I know I'm right I know my calculations....

So I don't believe in ultrasounds to be very accurate

Always get more than one opinion...

Hi P.-
I bet you and your brother/sil are freaking out-
small world- I just got a call from my coworker (grandma of the same situation- wonder if we're talking about same couple)
Talking to the specialist is best.
I am a perfusionist- do open heart surgery- my husband does peds. This was our first question carrying twins- do they have 4 chambers to the heart.
Just for somantics- a heart has 2 atria and 2 ventricles. A baby with only 2 chambers can have something called AV- canal, very common in Down's kids. OR- they can have something called hypoplastic heart where they are missing one side in essence- one ventricle. These kids aren't as commonly Down's per say so I'm guessing the Doc was referring to the first. What it means is open heart surgery as a baby- very repairable but yes- the Down's is there but no one knows the severity of that condition. So don't be too disheartened. They measure the folds in the neck, you can have an amnio to make sure if you need to know.
I dont know where you live , but if the worse case happens and it is one of these conditions and you need some help with specialists in heart surgery- email me down the road.
I will say prayers for you all and have faith. He might be wrong.
B. Jarmoluk
____@____.com
me- 47 yo mom of 6yo twins, med. prof. , wellness coach in mpls mn

my first ultra sound...my son had NO STOMACH...they wanted me to come in again to look for the stomach...I never did, I thought it was a bunch of bs really and another way for them to rake in $...so I never did, my 4 year olds stomach is fine..

to determine downs syndrome, it is done through blood testing, please tell your SIL to calm some, ultra sounds aren't always accurate...

P.,

Another example of a wrong ultrasound... I have a friend who was told her baby had fluid on the brain and cysts on the kidneys of her baby. A second in-depth ultrasound showed everything to be fine.

Best to your sister, and I'll have her in my thoughts.

J.

Hi P.,
Thank you for asking on behalf of your brother and SIL! My 4 year old son has Down syndrome. First off, let me say that having a child with special needs is more of a blessing than anything. Our child has enriched our lives in ways that we can not even express! He cries, laughs, hugs and kisses, gets in trouble, goes potty by himself, makes jokes, helps do laundry, hugs his little sister when she is crying and takes away her toys to put it where she can't reach it just to torment her, and the list goes on and on! You see, aside from a diagnosis, he really is just a kid! Sure, there are issues to deal with. Dr. appointments, surgery, therapy, etc., but really, what kid doesn't have special needs (or adult for that matter): reflux, tubes in ears, doesn't sleep at night, etc.

There is a great debate going on right now about prenatal testing for Down syndrome. What the medical community tends to do is paint a pretty bleary future for these kids that just is not true. Ask any parent who has a child with special needs. I think the advantage to prenatal testing is forewarned is forearmed. We did not know about Joe's diagnosis and were "blind-sided" about an hour after he was born. We were in shock for a couple of days. Then we just decided that we're simply going down a different path than we expected. That doesn't make it worse. And he was just so darn cute, who could resist loving him!

I could write forever about our experiences, but I don't have that much room to write. Please pass on my information to your brother if he would like to speak with me. He can email me or we can exchange numbers if he wants. Also, please have him contact the Down Syndrome Association of Minnesota at dsamn.org. They can supply him with information and contact with other parents.

Let me leave you with this:
1) There are no guarantees in life. You might have a child with a disability, or one who is stillborn, or one who is going through chemotherapy treatment when she is 3, or one who is killed in a car accident when he is 9, or one who is hooked on meth. when he is 16. Love that child, no matter what, because you just don't know.
2) Don't be afraid of the unknown. There is an incredible amount of information and support out there for parents.
3) Think positive and simply love that baby! He/she is just like any other baby, will eat, sleep, poop, and cry and will want mommy and daddy to hold them and rock them to sleep.

Best wishes to you!
K. - Joe's mom

She should try to stay calm about the whole situation. So many times the doctors predictions are inaccurate. The only real way to know is if they do a genetic test on the baby (amnioscentisis) and there is a risk of miscarraige with that, so be sure she is sure it makes a difference to her or not before deciding to do that.

Hi P.,
I personally didn't have an experience with a baby like that, but my neighbor did. They told her that her baby only had 2 heart ventricles. Freaked her out and then when they finally went to the specialist and did the test that they needed to, it turned out to be a false positive and the baby had 4 ventricles after all. Those ultrasounds produce a lot of false positives. When I had the 20 week ultrasound, the technician told my specialist that she couldn't find the nuchal ridge (the nose cartilage) which is an indicator for Down's. They have to disclose that, which then makes you wonder for the next 20 weeks. I ended up having a healthy, normal little boy. I choose not to have those tests anymore. It creates more scare for the parents and makes pregancy very long when you have a false positive.
T.

P.,

I have a different story ... a friend of mine just had a baby earlier this year. She is over 40 and it was her first pregnancy and they took every possible precaution and every possible test. Throughout her pregnancy, and in fact, up until the week she gave birth everyone assured her that her baby was normal. But, he was born with Down's. The parents were shocked, to say the least, but have adjusted very well to the situation and their baby is otherwise happy and healthy.

Another story... when I went in for my appointment 2 days prior to my due date the doctor said that I was losing fluid and the baby was in danger so we had to induce. Turns out I wasn't losing fluid, my daughter was just 2+ pounds larger then she thought! I was in labor for 3 days and my daughter got stuck on the way out and it was horrible. I attribute my hard and LONG labor to the fact that I was induced and it was not necessary.

Ultrasounds are only as accurate as the people who read them; and let's be honest, they are not the easiest to discern. Wish your brother and SIL luck and tell them to try to remain calm until they have a few more opinions on the matter.

Whatever happens, I wish your family the best.....

I'm thankful for all the people on here who shared their experiences with kids with DS (the mothers, teachers,etc). Its you guys who made my experience having a daughter born with DS so great. My daughter, Ava, is 3 1/2 and has Down syndrome, but doesn't have any heart problems. I was living in Kansas City when she was born, and I immediately joined the local (great) support group. I knew I had a 1/33 chance of having a child with DS (blood test), but it was still a bit of a shock when she was born. That quickly wore off, and she is the most amazing child ever. Now that I live in Iowa, I am again involved in a great support group. My daughter goes to regular preschool, a daycare where she is the only one with special needs, and is embraced by everyone she has ever encountered. Every preschool she has been in, she has been one of the favorite kids. I just wanted to share some of these things with you because I know your family is freaking out, and things could turn out either way. But if it turns out the baby has Down syndrome, after the initial shock wears off, your family will be so blessed.

Best wishes!

I have never had this happen to me, however my sister and BIL were also told that there baby was going to be born with DS. They (the Dr) were 90% positive of this. My sister of course was freaked out about it. In the meantime she went to a Specialist in Rochester MN and had a 3 D ultra sound done and the baby was healthy and "normal".
I cant imagine what they are going threw right now or what they are thinking, but they must see the specialist and maybe even consider having a 3D untra sound done. Give them my prayers.

I am in the natural healing field and this is the first thing that came to me when I started reading your request.
I know this may sound crazy but visualization is very powerful! visualize this baby how you want her to be,you have nothing to loose and every thing to gain. pray and think possitive the whole time. Every day before you get up do a little meditation,where you picture the baby being perfect. Also at this same time as you are thinking of the baby you are sending it energy. So imagine your hands transmitting this energy to the baby as well,by placing your hands on your uterus while meditating,you can also use color,like violet to send healing to her. This does work and is very powerful! I hope this helps....as much as we love our babies its not hard to send them loving energy,this is exactly what prayer is as well,this is why it is so powerful,our thoughts create reality!

That would be so hard. When I can't change a situation, because I have no control over it, I know all I can do is pray.

Ultrasounds are not always accurate. I had one at 39 weeks to be sure our baby wasn't breech and they said that they were worried because the baby only weighed 3 pounds. When my daughter was born 3 days after that she weighed 8 pounds. I freaked out for nothing. Also, I had a friend that was told her baby had down syndrome because the ultrasound showed all the signs that he did. The doctor said he was 99% sure. Well he was born and completely normal!!! Good luck to your SIL!

I also had a scary ultrasound like you are describing but my daughters heart defects were different. The doctor did an amniocentesis to check for Downs Syndrome and other chromosomal abnormalities but none were found. 1 in 100 babies is born with Congenital Heart Disease but they don't all have downs syndrome. About half of babies born with Downs Syndrome have CHD. She definately should have an amnio done to know for sure. Now that she knows about the heart disease she has lots of time to prepare. There is a lot of helpful information on the internet. Here are a couple of links. Also, the University of Michigan in Ann Arbor (Mott Children's Hospital) has an excellent specialized pediatric heart team. They are experts on HLHS.

http://hlhsinfo.homestead.com/
http://www.pediheart.org/parents/defects/HLHS.htm
http://www.hopeforhlhs.com/
http://www.med.umich.edu/mott/chc/patient_con_hyp.html
http://tchin.org/index.htm
http://www.littlehearts.org
http://www.medicinenet.com/congenital_heart_disease/artic...

My daughter has had three open heart surgies and is turning 6 this May. There is hope!

10 years ago after an ultrasound my sister was told that her baby had some sort of brain tumor and the baby would probably be born with Downs Syndrome. He turned out to be perfectly normal. But, the one year old they already had seemed to be perfectly normal and ended up being autistic. You just never know.

All children are a gift from God. I have seen many down. S. children at our pool & they all seem happy & well behaved. There are also many more resoures then there used to be for help.

P.,
Down Syndrome is the name we all use for a condition that labels an extra chromosome in the 21st gene, Trisomy 21. At this point, I would be much more worried about the heart problems than the trisomy.
My daughter's first child was diagnosed with Trisomy 18 or Edward's Syndrome. She had multiple heart defects and other 'markers' that showed up on the ultrasound. They were told about this over the telephone and told that the baby was 'incompatible with life.' That was almost 6 years ago, a very devastating time. Since that time, I've met several children with T-18 who are alive and much loved by their families. My daughter's little girl died during delivery following a full-term pregnancy. Her heart couldn't take the exertion of labor.
I've known many children with Down Syndrome. (I am a teacher.) There are so many levels of competency that it is very hard to categorize when you don't know all of the 'markers'. Many DS children get along quite well in school and then in adult life. One young lady has a waitress job at the local Culver's restaurant. She is very friendly and does very well.
Try these websites for more information about trisomies:
http://www.trisomyonline.org and
http://www.trisomyonline.org/chromlinks.htm#ch21
There are other sites specific to Down Syndrome, too.
Good Luck to your brother and s-i-l.
MN Grandma S.

I wouldn't trust the ultrasound like everyone says they can be wrong both ways. We had an ultrasound on our fourth baby and everything was fine. We found out when he was born he had a rare heart defect where he was only born with 3/4 of a heart called Hypoplastic left heart syndrome. They should have been able to catch it at our ultrasound and didn't. He has had to undergo two open heart surgeries and still has one to go. If you saw him you would never know all he has been through in his short life. If your brother and SIL find out that it is the baby's heart and would like to know someone elses experiences with a heart baby just email me privately and I would be happy to share our sons website and what we have been through. We wouldn't change anything we have been through for the world and would do it all over again in a heart beat!!

Good luck

D.

I work with handicapped people and quite frankly, Down Syndrome isn't the end of the world. It is very easy to take care of a Down Syndrome child compared to other handicaps! Best wishes to you and your family!! I know it's tough - it could be nothing though!