New...any research done on..

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jenndola
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Re : New...any research done on..

Postby jenndola » Sat Nov 24, 637674 5:36 pm

PIH is pregnancy-induced hypertension.

I think it's pretty common for a lot of us to feel pretty clueless about the events surrounding our deliveries. Between the urgency, the speediness and (in many cases) the mag sulfate and pain meds, it all becomes a blur. I don't know how we manage to remember a thing.

Your son is such a handsome, happy boy! I hope things continue to go well for him and you're able to have his trach removed next summer. What an exciting event to look forward to!

pkandm
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Re : New...any research done on..

Postby pkandm » Sat Nov 24, 637674 2:33 pm

Just another quick question-what is PIH
I will have to get some of my med. records-like I said, everything happened so fast I was fine one day and the next I'm being induced and delivering a baby and then he has problems---needless to say at that point I could care less what was going on with me.
I've checked out your guys sites.....cute cute kids!!

pkandm
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Re : New...any research done on..

Postby pkandm » Sat Nov 24, 637674 1:57 pm

Thank you so so much. My heart sank when I read your posts. Very helpful!! I know that the research is probable still so new-but at least it has something for me to go on. I will actually call the genetisist that met with us when Mitchell was born and see if he knows anything-will also maybe copy this stuff and send it to him. I know I'm going to have to meet with a specialist-well first my OB and maybe she can direct me in the right direction-I really liked her and knowing how cautious she is I would guess she'd keep a close eye on me...but we'll see. Right now with Mitchell I just can't even take the chance of being on bedrest, but maybe in a year or so. Thank you again so much. I may do a little research on my own and see how many of the t13 moms had PE. humm.....

Oh-Another very important note.....as I'm reading that lit. on t13 and preeclampsea-it paints such a poor picture of t13. Yes it is a horrible horrible syndrome-and yes not many children survive. I think they say 8% make it to their 1st birthday. A very very devistating dx. BUT....please visit my wonderful little boy's website--he is such a fighter and very much alive! He has made that 8% and is now almost 21 months and going strong!!

www.caringbridge.org/mn/mitchelljohncragg

jenndola
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Re : New...any research done on..

Postby jenndola » Thu Nov 15, 637674 11:25 am

Under one classification system for HELLP, if you have 2 of the 3 clinical findings it's considered partial HELLP Syndrome. Still a form of HELLP Syndrome, still plenty dangerous, but just not full HELLP Syndrome.

Have you seen your medical records from the hospital? You might consider requesting a copy and seeing what they say (although getting a copy can be a huge pain in the rear). It can be an interesting and sometimes enlightening read.

Sorry I don't have more to contribute. I wish you the best as you make this difficult decision. I'd definitely have a very long chat with a good perinatologist!

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caryn
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Re : New...any research done on..

Postby caryn » Thu Nov 15, 637674 10:45 am

Sorry to be so behind on this! I've linked to the abstract of the study on trisomy 13 and PE mentioned in the New Yorker article (the study was published this year in the AJOG):

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

It starts off with

Women who are carrying a trisomy 13 fetus are more prone to develop preeclampsia.

I agree with Tanya -- this is such a new area of research, and I suspect there's very little more out there, so it's definitely something to discuss with a peri who'll have more of an idea of what's currently in research.

Best of luck in your decision-making -- and please keep us posted with your findings!

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Re : New...any research done on..

Postby youtan » Wed Nov 14, 637674 8:47 pm

Katie,

I would suggest in your case to have a consultation with a specialist to go through all the available options in your case. I do not know if trisomy 13 is a genetic condition. If so, genetic counselors should be able to discuss this with you.

We recently found out that my two boys have muscular dystrophy, an X chromosome linked genetic disorder. I was told that if I wanted to have more children that there is genetic testing available in the womb, if that was something that was compatible with our beliefs.

As for preeclampsia, aside from the paper quoted, I've not heard of such correlations. But, those studying chromosomal disorders probably haven't had a chance to yet look at case studies of the carriers. For instance, MD is passed down through the women in the family. In my family, my grandmother, my mother, and I have all had variants of preeclampsia - and all must carry the gene mutation. Is there a correlation? Could this mutation actually have caused the pre-e in all of us? Is pre-e more common for those with various genetic mutations? Genetic research is still just breaking new ground. I hope - I really hope - that these kinds of questions will one day be answered. But, first, I hope that they are able to cure muscular dystrophy and other genetic disorders.

Sending you and your family prayers during these difficult times.

carissa
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Re : New...any research done on..

Postby carissa » Wed Nov 14, 637674 5:26 pm

Hi Katie,
I have not heard of any link between the two. I certainly had HELLP syndrome and my son had no genetic or chromosomal abnormalities. He was only 2lbs 8ozs and we had a lot of struggles, but he's otherwise healthy.

I'm pregnant with baby #2 and am very concerned about HELLP and PE again. During my pre-conception consulation, my OB said that if I did develop HELLP again, it would most likely be later in the pregnancy than the first time. I was 29 weeks with my first.

Also, I could be wrong, but I believe that in order to have HELLP, you must have all of the three symptoms - Hemolysis, Elevated Liver enzymes & Low Platelet count. Here's a link with more information: http://www.aafp.org/afp/990901ap/829.html

Good luck to you. It's a hard decision! (Actually, we just kinda decided we'd like another one... the actual "creating" of one was a little surprise!)

emersons mom
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Re : New...any research done on..

Postby emersons mom » Sun Nov 04, 637674 2:27 am

ooops and you call your appointment....a pre-conception consultation

emersons mom
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Re : New...any research done on..

Postby emersons mom » Sun Nov 04, 637674 2:24 am

Katie,

I think i read somewhere there is a link with trisomy 13 and hellp or preeclampsia....i am sure it was a post by caryn in the pe in the news section.....from the new yorker article, I quote:

One tantalizing piece of evidence comes from a rare genetic syndrome called trisomy 13, in which a fetus receives three copies of the thirteenth chromosome. The syndrome, which is ultimately fatal, can be diagnosed early in pregnancy, through amniocentesis, and most women with affected fetuses choose abortion. Of the women who decide to carry such fetuses to term, the incidence of preeclampsia is more than twenty-five per cent. It turns out that the gene for soluble FLT is on the thirteenth chromosome, and Karumanchi, in a paper that he published last year, showed that women carrying fetuses with trisomy 13 also have large amounts of the protein in their bloodstreams.

the topic is here by caryn:

http://preeclampsia.org/forum/viewtopic.php?t=17623

I would suggest you see a perinatologist or a chromosomal specialist that can help you learn if you carry the genetic components that might cause you to be at increased risk for developing preeclampsia, as well as, like fiona suggested, test you for any underlying disorders that might be exascerbated by pregnancy.

Please find a doctor you are comfortable with and expect ...if not demand to be monitored closely during any subsequent pregnancies.

best of luck!!!

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Re : New...any research done on..

Postby fiona » Tue Oct 23, 637674 10:23 am

Katie, welcome,

I think you are very wise to have a pre-conception consult before trying for another one.

As to your question regarding a connection between pe and chromosomal disorders, I'm not aware of any formal link, anecdotally, however, my son's ped suggested to us that there is research suggesting that pe is related to fetal abnormalities. My own son, Jay, has a chromosomal abnormailty that is not hereditary - we didn't find out until our third son was born, and haven't had him tested yet.

The decision to try again is a difficult one for many of us preeclampsia survivors. Making sure you have a high risk OB you feel comfortable with and trust is a good place to start. Being tested for any underlying kidney, clotting and autoimmune disorders is also an excellent idea with your history.

I wish you luck with your decision. Please ask as many questions as you need to.


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