What are some great high-risk pregnancy resources?

[Susan M.]

At WEGO Health, we’re always looking to find high-quality information and conversations that matter to our health activists and we’d love to know where you’re finding helpful resources on the topic of high-risk pregnancy.

We know there are a number of great sites dedicated to pregnancy in general but I’m hoping we can get really specific. What specific pages/groups/etc. have you found that offer resources for the high-risk pregnancy community? We’re interested in everything from links to particular discussions, blog posts or threads to message boards, forums, blogs and whole websites that you’ve found that others might not yet know about.

[daisy]

The Oldest and Largest Infertility (INCIID) Adoption and Pregnancy online community has a really active community and the link to their high risk pregnancy thread is available at: http://www.inciid.org/index.php?page=highrisk. But, what I like most about it is the section on coping and support, at http://www.inciid.org/index.php?page=pregsupport, which can be very useful for people in many different situations. The High Risk Pregnancy Support Center is also very helpful - you need a password to log in but you can get a sense of the types of discussions (the swine flu vaccine and lack thereof is a VERY hot topic right now) at http://www.thesurvivorsclub.org/support-center/health/womens-health....

[chedeen]

My favorite pregnancy related group is: http://community.livejournal.com/pregnant/
They have everything on there, and I've always been able to get my questions answered. I also like www.babycenter.com for more general questions that I can search for.

[hedalyn]

These are great sites!

As a NICU nurse, I find that pregnant women and new mothers are, for the most part, very knowledgeable of healthy pregnancy and 'how things are supposed to be'. However, many may have no true concept of high risk pregnancy, premature birth, or newborn illness. I have met women who were pregnant with triplets whose OBs apparently didn't even mention the possibility of premature birth resulting in NICU admission for her babies. I believe in positive thinking, certainly, but education about possible outcomes is always the best. On the flip side of that are women like me, NICU nurses, whose training and experiences make them overly paranoid during a healthy pregnancy! I guess middle ground is best.

I would like to share with you all two blogs by mothers of premature infants (with their permission; they told me they would like their stories to be educational and heartening to other parents) that I check daily because the progress from extremely low birth weight infant to healthy toddler is so beautiful!

www.cartergracebelden,blogspot.com

www.ellajeson.blogspot.com

Also, I really like marchofdimes.com largely because they also aim to educate health care professionals and because they have a goal not just to educate but also to raise money for research to improve outcomes in high risk pregnancy and premature birth.

[Stacey R Nichols]

I mostly participate at http://autumnblessings.forumotion.net/ which is a group formed from pregnancyweekly.com which was a board I found when I first found out I was pg with my daughter in March 2007. close to a year ago they moved our forum to the new site and it is mostly the same people, all who have November 2007 babies. and of course those same Mom's who have had another baby since then, are currently pg, or ttc'ing. it's a great group that I consider friends. I almost sometimes contribute at babycenter.com, momslikeme.com, babyzone.com, and whattoexpect.com.

[Stacey R Nichols]

I had miscarried a few times since 2001. then we stopped ttc'ing for a few years. then in 2005 miscarried again. then stopped trying again. then in late 2006 we decided to try again. got a bfp in the end of Feb 2007 and went straight to the dr. had to have progesterone suppositories for the 1st tri. turned out that COULD have been why I miscarried all those other times. I was so worry thru the whole pg. a friend gave me a sonogram they had so I could listen to the heartbeat whenever I wanted to. it helped to comfort me a bit.
we are considering ttc'ing again soon, but I'm so worry about not getting to the dr soon enough after getting a bfp, or needing the progesterone again, or whatever else may come.

[cindy454]

I spent a lot of time on thebump.com on the high risk pregnancy board there. For more specific concerns, I really liked preeclampsia.org. The forums there were very informative. I also really liked dlife.com. It's a general website for diabetes, but they had information that was helpful to me with gestational diabetes. They had great recipes!

[ennybody]

I am a mom of triplets and had a very hard time conceiving, but finally did, with the help of IVF with ICSI. I originally got pregnant with quadruplets, but lost 1 early on, and the remainder of my pregnancy was high risk, with gestational diabetes and premature labor at 27 weeks. I was hospitalized in the high risk unit until I gave birth at 29 weeks. The babies all had health issues, and 1 had heart surgery, chronic lung disease and other prematurity related issues. Still, my journey is a blessing. My children are healthy, and beautiful and I have since helped dozens of other couples have their families, through referrals, advice and support. One of the sites that really got me through the pre-pregnancy issues through the birth and beyond, was www.inciid.org. I don't think I could have made it without the women posting and supporting on that site. Other great sites I am involved with are www.storknet.com, www.cafemom.com and www.ivillage.com.

[Nicole M]

Hi everyone. Im Nicole. And I think that this is a really great site. Some other sites tha are great for information are...
Cafemom.com.....this is a site hat is contributed to by thousands of women....only mommies! And while its not always sound medical advice...sometimes it is just nice to know that there are others out there with the same concerns and issues that you have because the biggest thing Ive noticed is that most women in a high risk pregnancy situation feel very isolated and alone.


Parents.com is another great site because it helps to break down some of the medical wording that surrounds a lot of issues that come up n pregnancy and raising children and makes them very easy to understand and therefore a lot less scary sounding. They also give additional resources at the end of their articles in case more information is needed.

Also....the mayo clinics website is also a great resource if you are looking for stricly medical information. They have the easiest site to click through and everything is presented in a very clear manner.


Hope this helps....looking forward to talking more with you ladies in the future.

[Elina N]

Hello everybody!

My name is Elina and I am a very active contributor to many public websites and blogs amongst the topic of high risk pregnancies and other health issues I find that people should be more aware of. I have a large chance of being a "high-risk" pregnancy and like to look up information and share my knowledge as well as receive knowledge and websites from others on online communities to learn more about progressing my health and helping others progress theirs. The websites I peruse the most are the following: Livejournal.com, pregnancytoday.com, wrongdiagnosis.com, 23andme.com/pregnancy/, communities.helia.com, and lasty Twitter and Twitter's TweetDeck. I find wrong diagnosis has a PLETHORA of information about high risk pregnancies and strange body occurrences that can help many women and their partners throughout their pregnancies. LiveJournal, Twitter, and TweetDeck are best for blogging and I find that babycenter.com (a website I recently have been looking over as well) along with pregnancytoday.com are great for insights on difficult pregnancies and have a bevy of supportive women. I would consider myself a health activist and enjoy that WEGO also supports us activists!

[AnyaJB]

Hey All! I'm new and fairly young, I was diagnosed with severe endometriosis and am battling that. I do want to have kids in the future (not anytime soon) but my doctor is pushing a hysto, so over the past year or so I have been really doing research, trying new things, etc. I also have some friends who have had trouble conceiving.

I was just looking over at the posts to make sure I don't do any double post to the great links everyone has.

Here are some I like:

http://www.obfocus.com/

This one gives everything to excerises/diet to general info on specific conditions leading to HRP, and also up to date news regarding FDA. They also have a lot of helpful links to other resources.

Parents.com

Good resource for before, during, and after pregnancy. ( I have a lot of friends who find this site helpful)

and

babycenter.com

http://www.americanpregnancy.org/pregnancycomplications/

[Elina N]

Hello Anya,

I'm 25 and have endometriosis as well. Unless your endo has spread to every part of your functioning ovaries, fallopian tubes, etc. PLEASE DO NOT GET A HYSTERECTOMY! Dotors push young women to get hysterectomies everyday - and the results are the endo grows back and you can no longer have children. There are tons of holistic methods to help you. If you are in the NYC area I can point you to a center that has ridden women's troubles of endo, pcos,chocolate cysts, and many more ailments..

Feel free to contact me on here to get more information! If you're not in the NYC metro area, you should do research on centers in the area you live in...but I"m going to start this program very soon!

The NYC program is called Laughing Sage Wellness and this is their website: http://www.laughingsagewellness.com/

I'm here for you,

Elina

[AnyaJB]

Hey Elina

Thanks I know.. I'm not going to get it. I actually have a former professor who I am going to start seeing for Acupuncture and Herbs ( I study acupuncture, but my focus is Oncology not women's health) So I'm hoping that will work. I was on some herbs for about 6 months and then it stopped working. Currently I'm doing hormonal therapy: it wasn't what I wanted, but being in severe pain 3 out of 4 weeks in the month and in and out of the ER I grew desperate, as this was interfering with everyday life. No pain and its been 4 months, however I don't like the idea of my insides being messed with. His ex wife had endo as well and ended up havinga child with no complications.


I am 25 too, how long have you had endo? as far as official diagnosis? Have you had a Laparoscopy yet? I had 2 and I am debating whether or not to get another one in the new yr.

I will check out your link ( Im in chicago though)


Do let us know how the program works for you.

thanks :)

Anya