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From Lisa
lisalaventurebernier@yahoo.com I had HELLP 4 years ago and this past fall I was diagnosed with mixed connective tissue disorder and I'm wondering if anyone else has this.
From Sylvia
sylruss@mts.net I am interested in finding out if my son (HELLP baby) is the only one especially sensitive to animal fats...he throws up for at least 3 days if he gets too much e.g.pizza From your research, have you found out from other mother's babies, if they have this problem too? Thanks.
From Sheila
I had HELLP at the age of 27. My son was born at 33 weeks. We both survived with some complications on my part but he ended up seemingly healthy. Other than projectile vomiting and waking up 10 times in the night he appeared okay until about 3 months before his second birthday when he started having repeat viral infections and went down hill from there. He was diagnosed with Leukemia two weeks before he turned two. He is now 9 and has been off treatment for 5 years. I always wondered if the HELLP was a contributing factor to the cancer but I have not heard of any other child having this connection. Anyway, I think I would like to contribute to your study if possible. Let me know what I need to do.
From Meryl
I'd be willing to help; however, I don't have any medical records. I could give you the name and address of the Ob/Gyn I used but I do not want to contact him. As far as I am concerned he was negligent. He had a nurse who didn't know how to take BPs and she wrote down 120/80 each time. I was spilling 4+ protein at every visit during the last months and he never bothered to look at the chart. When I went into the ER on my due date, I was so full of fluid, my BP was 197/137 and my son was born at 4lb 9 oz full term. The placenta was full of infarcts. My vision was all blurred; I had severe pains in my back and all the HELLP symptoms. I am so lucky to be alive and lucky my son is fine. He is now 8. I had him when I was 45 which should have been a given that I was an at risk mom just from age alone. I'm 53 now and I seem to be fine. I just have no records at hand. So I don't know if I could be of help. I'm sure this doc tossed out all records to protect himself. It took 6 months for my vision to be ok. I exercise quite a bit and work especially hard to stay fit. So far I'm ok. So let me know if there is anything I can do without records.
From Ann
annctate@gmail.com My heart aches for those who suffer from HELLP. I remember too well the helplessness and frustration my husband and I felt. Fortunately, our daughter Kelli (2.2 lbs at birth) is a happy healthy 18 year old. We just took her (our baby) to college last week. She has always been very athletic and surprised her pediatricians with each hurdle she overcame. We were indeed lucky. My first birth (at age 31) was also premature, but for no known reason. I did suffer from Cholestasis of Pregnancy (link below) which is liver involved as well. This makes me think there is some kind of connection since the liver was involved in both pregnancies.
http://www.americanpregnancy.org/pregnancycomplications/cholestasispregnancy.html
I have learned during this entire process that I am the best advocate for my own health. I recently had to stand on my head just to get tested for low thyroid and it turned out to be VERY low! Menopause of course presents its own problems. I feel any "female" trauma to your body is all connected in one way or the other. My health definitely deteriorated after giving birth to Kelli. Prior to that, I was in excellent health. During my pregnancy, I was under a great deal of stress. I had a very high powered job, two year child and my husband was a police officer. I blamed myself for Kelli's premature birth due to this stress, as I am sure all mothers suffering from HELLP do. I want to do anything I can to help other women avoid this horrible condition and push for physicians to keep a watchful eye for long term effects. Please consider me an advocate for HELLP.
From Courtney
courtneycadkins@yahoo.com I had HELLP Syndrome and was delivered at 26 weeks gestation. My condition was overlooked by myself (my 1st pregnancy and I didn't know what was normal) as well as doctors throughout my pregnancy and was misdiagnosed while in the hospital for over a week. I was near death and transferred to another hospital where my daughter was born at 2 lbs 2oz. She was in the INC for 76 days and is now 4 months old at 10 lbs 11oz. She has had lots of problems and still has a rough road ahead but is doing well considering all that she has been through. My husband and I are so grateful for our miracle child! I am still suffering from liver and kidney problems and I am so tired of having to explain HELLP Syndrome to my doctors - no one knows what it is! I really want to have more children but I have had 3 different doctors tell me 3 different things and I don\'t know who to believe. Having HELLP syndrome has changed me forever (as well as close friends and family). I am so desperate to find any way that I can learn more and help others affected by HELLP Syndrome. I am working with a kidney specialist right now and he is not sure, but thinks that I could have had some kidney problems prior to developing HELLP. He is trying to find out if there may be a link between kidney dysfunction prior to pregnancy and the developing of HELLP.
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