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TOPIC TITLE: Baby with Genetic Diseases
Created On 1/6/05 11:53 AM
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mosh
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1/6/05 11:53 AM
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Could anybody help me? i had a baby in the 7th month (the baby was niftar a day later) the doctors say that the baby had a Genetic Diseases that does not come from the parents, & does not mean that this will happen again, i would like to know if anyone knows of this kind of expeirence & could refer me to a doctor i should use the next time Iy"h.
 
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downsyndrome
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1/6/05 12:26 PM
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You must ask the doctor precisely what the disease was called, otherwise, you are swimming in a large sea of possible genetic disorders. Keep strong. Sarah S.
 
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helpless mom
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1/6/05 7:12 PM
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First of all, I am so sorry for your loss. There are many wonderful doctors who deal with specific genetic disorders, but I am not really sure what you mean by a genetic disorder that does not come from the parents. To my knowledge the word genetic denotes that it is " in the genes" Ones genes are a make-up of both our parents. I would suggest that you discuss with your doctor exactly what he/she means and then perhaps call Dor Yeshorim, who have a vast knowledge of genetic diseases in the frum community. I wish you the best of luck
 
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mosh
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1/7/05 11:11 AM
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The doctor said that it is called tripolidy which is a Genetic Disease
 
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GamZuLetovah
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1/7/05 1:15 PM
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First, I would like to say that my heart goes out to hear of your loss. I wish I would just have the magical words to help ease your load.

Quote

Originally posted by: mosh
the baby had a Genetic Diseases that does not come from the parents

You probably meant that it is not hereditary, just like Down Syndrome is genetic and is not necessarily hereditary.


-------------------------
The sun is always shining! There are just times we don't see it.
 
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motcha
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1/13/05 6:04 PM
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I wish you a nechomoh.
http://bbs.babycenter.com/board/pregnancy/pregnancygrief/1143151;prod-bcjive-sessionid=S5MJTLULANWXWCUAQIZQYTQ?_requestid=403911 is a discussion board I found for Triploidy loss. It is for the general public and not necesarilly Jews but I hope it helps.
Sincerely,
motcha


Edited: 1/13/05 at 10:28 PM by motcha
 
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sidralee
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1/17/05 2:31 PM
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Mosh - I am sorry to hear about your loss. I am a genetic counselor, so maybe I can help explain triploidy...

Chromosomes are the genetic structures in our cells that contain all of our genes. Triploidy is a chromosomal abnormality. A person usually has 46 chromosomes per cell, 23 maternal and 23 paternal. In triploidy there are 69 chromosomes per cell. The extra set is usually paternal, due to two sperm fertilizing the egg. Triploidy is a sporadic, not an inherited, genetic condition. Triploidy is not related to maternal age and is not more common in Jews.

Sidra


-------------------------
Sidra Shapiro, MS, CGC
Certified Genetic Counselor
 
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mosh
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1/18/05 9:30 AM
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To: Sidralee,

I wanted to ask you regarding our case being that this was our first pregnancy, which ended by 30 weeks & 5 days when the waters broke & gushed out completly which led to an emergency cesarean section, do you think we should have any concerns about further pregnancy’s. (using a high-risk, waiting before starting again etc..)

Please help us if you can!

Thank You!

Mosh
 
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sidralee
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1/18/05 2:54 PM
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Mosh-

Usually your OB will want you to have two normal menstrual cycles before trying to get pregnant again. You will need to check with your OB on this.

There should be no increased risk for triploidy in your future pregnancies. However, the risk for some chromosome abnormalities (such as Down syndrome) does increase with age. Since I don't know how old you are I can not tell you what that risk would be.

I suggest you ask your OB to refer you to a genetic counselor in your area. It is always best to have an "in person" meeting to discuss your concerns. The genetic counselor can also advise you on screening for Tay-Sachs and the other "Jewish" genetic disorders.

-Sidra


-------------------------
Sidra Shapiro, MS, CGC
Certified Genetic Counselor
 
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YOUNGLDY
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2/27/06 6:42 PM
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HI, SINCE U ARE A GENETIC COUNSLOR, HAVE U HEARD OF DYT-, OR DYSTONIA IN THE JEWISH POPULATION?
 
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Admin
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2/27/06 9:48 PM
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Hi,

Please do not post in ALL CAPS. This makes it hard to read and it makes it seem as if you are shouting.

Thanks,
Admin


Edited: 2/28/06 at 5:49 PM by Admin
 
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life18
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10/31/06 1:58 PM
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we are in our fifth month of pregnancy and were just told that our baby has a rare genetic disorder called trisomy 18...im only 21 and its our first child....out world just crashed...we dont know where to go from here....but my biggest concern is...is that is this gonna happen to all my children?
 
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Bayla
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10/31/06 6:16 PM
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I happen to know something about Trisomy 18 (also known as Edwards syndrome) as 1) a good friend gave birth to a baby with it & 2) we ourselves had a baby with holoprosencephaly and in the UK there is an support group for parents of children with Trisomy13 (Patau's syndrome), Trisomy 18 & holoprosencephaly. For some reason, probably because they are all rare, & share some of the same symptoms, they are often lumped together.

Someone has posted specifically about Trisomy 18 on this site, offering support for anyone who needs it. Here is the link to the thread:

http://www.frumsupport.com/Forums/messageview.cfm?catid=8&threadid=594

I wish there had been this sort of support forum when we were going through the diagnosis and loss of our baby 13 years ago.....

 
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hb
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11/3/06 10:42 AM
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Dear life18,
Sorry you're going through this difficult time. The Family First Magazine/Mishpacha had a very detailed article on Trisomy 18. I personally know a child with Edwards/trisomy 18 that's about 16 years old (very rare!!) If you want me to connect you to this wonderful family, please pm to me.
Hatzlocha.
 
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life18
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11/9/06 12:03 PM
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does anybody know of a website for frum people who have or expecting a baby with trisomy 18?
 
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rfm
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12/4/06 10:39 AM
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Quote

Originally posted by: life18
we are in our fifth month of pregnancy and were just told that our baby has a rare genetic disorder called trisomy 18...im only 21 and its our first child....out world just crashed...we dont know where to go from here....but my biggest concern is...is that is this gonna happen to all my children?


life18, Hashem should give you the strength to be strong during this challenging time. You have the opportunity to grow and come out stronger. I know because I have been there.

We had one healthy child with no complications. Our next pregnancy ended with a D & C at 10 weeks. Our next pregnancy was progressing normal (I was 22 at the time) until the ultrasound at 5 months where we discovered that our baby was sick. (Only after the baby was born did we find out that it was Trisomy 18) The baby was born early during the 7th month and only lived for 15 minutes.

As to your fears of this happening again, Boruch Hashem I had 4 more healthy children.

My advice to you is that you need a Rav to guide you through all the halachic issues. You will feel more comfortable knowing you are doing the right thing.


 
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life18
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1/17/07 9:00 PM
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i just wanted to update on my situation...at 26 weeks i was told by raabanim to terminate the pregnancy..they induced me and b''h exactly 24 hours later i deliverd the baby...everything went very smoothly...but i did have to have a d&c after since they realized that a small piece of the placenta got stuck inside...its now 7 weeks after and i feel pretty much back to normal b''h...we also just got back the results from the genetic testing and eveything came back fine..meaning it was just a fluke...my husband did look at the baby..he felt like he had to see that there was really a problem...it was a neural tube defect..he was actually able to see the problem(which i will bare you the details)...now just waiting for hashem to bless us iy''h with a healthy child!
 
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su7kids
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11/6/07 9:55 AM
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Hugs, Life18. May Hashem bless you IMMEDIATELY with a healthy pregnancy and a healthy baby.


-------------------------
Proud Mom of 7, MIL to 3, Grandmom of 4!
 
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froggy4
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11/9/07 12:45 AM
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those of you who lost a pregnancy can go to atime.org and click on pregnancy loss. youll find a lot of suport for what ure going through.


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froggy4
 
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YOUNGLDY
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11/14/07 3:36 PM
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Does any one here know about the genetic disease called Dyt1?
 
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