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draft beer and buffet included. It will feature live entertainment provided by the Causeway Irish Band. If you'd like more information, please contact Maureen Kernicky @ 610-585-2164 or visit their web site http://thesheilafoundation.org/ The Sheila Foundation has been an active supporter of the HELLP Syndrome Society. If you live in the area please consider attending this wonderful event.
From Summer
cvt1128@msn.com Please keep me on your email list. Please also add my infant son, Henry, to your prayers. He was born 2 months ago today and has not yet left the hospital. He has had two open heart surgeries and is critically ill. He's
been given about a 20% chance or less of surviving. Please, please pray. I just lost my sister a year ago March 10th to HELLP and am feeling completely overwhelmed. Thank you so much...
From Joanne
jump-jo@comcast.net (Horsham, PA) Are there any doctors in the Philadelphia area that are well educated in HELLP Syndrome? I am having several medical issues since having HELLP. Any help you could give would be greatly appreciated.
From Kristin
chriskris@comcast.net (Chester County, PA) I had HELLP with my first pregnancy (2002) and my husband and I are considering becoming pregnant one more time!!! I was hoping to find other Mom's in my area who would be interested in talking about their experience or if there is some kind of "support group"? Please post my email address to anyone interested in talking, especially moms who have made the courageous decision to have another child
From Jo
chongoschica@aol.com My husband and I had a baby girl Dec 16, 2003. She was 15.3 weeks early and weighed only 475 grams that is a little more than one pound, she was 10.0 inches long and you could actually see her veins through her skin when she was born. I remember watching her in that dark I. C. N. With only the light of her heat lamp shining down on her, so many hours we spent watching over her and praying that she would make it through. She has had 4 surgeries to this day including a fundo placation which means that we have to feed her through a button in her stomach. Fortunately other than that she is very healthy. I read the story of Taylor Hope and some others on your site and I cried, not only because it is a difficult thing to hear but also because I know all too well those experiences. I have searched for months for some sort of support group and I am, to have found you. Please give me any info on a site that I could go to offer my support and get support when I need it. Thank you for your time
From Mary-Ella
maryellafredrich@yahoo.com After my last child was born, I presented to the ER with extreme elevations of my liver and kept telling my husband something was going to explode. (when I could catch my breath) My son became extremely sick and has since been diagnosed with a fatty oxidation disorder. It's taken us five years to get a diagnosis. Apparently, if a mom has HELLP (which our son's geneticist is convinced happened to me) then someone had better start to look at the baby to get a diagnosis for an inborn error of metabolism. I was wondering if you have information of this happening postpartum for my personal use? Secondly, I'm curious as to whether you would want any information regarding mom/baby connection. I'm sick to my stomach to think my body was telling the doctors there was something wrong and nobody even researched it a little bit further. My liver did not heal itself as I have read should happen. Our doctor is now traveling the country speaking to ob/gyns about HELLP. The seriousness for newborn screening has to be understood. If you have an opportunity to go to fodsupport.org and look under medical information and the articles on HELLP being related to metabolic disorders in children. I did even before I realized what had happened to me. It may actually link to a HELLP website
From Melissa
Melissa.C.Gullotti@espn.com (Vermont) I just found your website today. After a picture-perfect pregnancy, I was diagnosed with HELLP Syndrome at 38 weeks -- after two tough weeks of thinking maybe I had a gallbladder issue. It was tough to tell as I only had a couple symptoms (intestinal pain mostly). After determining it was HELLP, we had an emergency C-Section and delivered a healthy baby boy named Tristan. After birth, I had to have a platelet transfusion, then had some complications with my incision (hematoma developed because my blood wasn't clotting) but aside from that all went well. At one month old today, Tristan remains fully healthy and happy. A question - I've read a variety of claims that have really ranged in answers about having another baby after having HELLP. Any thoughts or new stats you could share?
From Joann
jhardegger@hotmail.com Has anyone been experiencing these symptoms? Mine are dry, burning eyes, elevated blood pressure-it came down after the delivery, but 7 years later it is back up, aching muscles and joints (moves around-some days worse than others), cold extremities, fatigue. I think my cognitive ability has also diminished. I believe I can't multi task as I used to and my memory is not as good as it used to be, both short term and long term. Thanks
From Sharon
Sharonka322@aol.com (Indiana) I am having a hysterectomy this week, and was wondering, if anyone had complications with hormone medications? My md is worried, since my liver was so damaged during the HELLP that oral medication might cause severe damage and I would love some help here! Thanks.
From Beth
bgranai@mindspring.com (Cary, NC) My 34 weeker is now 3 and incredibly healthy. Very rarely sick at all compared to other kids. I have done quite a few labs during the course of so many miscarriages and have found a number of underlying immune-malfunction problems that are likely the cause of my recurring mc problem. I am totally healthy when not pregnant, and virtually never sick. However when I become pregnant I have a number of antibodies that go crazy. I wonder if other HELLP moms have some of these problems too. Happy to share more details if interested.
From Katie
KMurphy@srwrightcpa.com I had HELLP with my daughter almost two years ago. They took her about 8 weeks early. I had every symptom almost to the extreme. It had even taken it's toll on my placenta and Madison wasn't getting the nutrients she needed. Until I was told about this, I had never heard of it. For a month my doctor just kept saying it was just high blood pressure which was normal and put me on bed rest. I urge any of my pregnant friends to read up and keep a watchful eye on their bodies. I wish I had known earlier. I am so thankful there is a group out there for information!! Thanks!
From Deanna
deesdmom@msn.com I'm 30 years old and a stay at home mom to ten month old Thomas James. I wish to share my story of preeclampsia and HELLP Syndrome with you. Mind you, this is the very condensed version of it. Well, I pretty much had a normal pregnancy for the most part. The only problems I had first developed around six months when I began to develop edema in my ankles and feet. Shortly, thereafter, I began to rapidly gain weight. I didn't have any problems with my blood pressure or protein spilling into my urine. I had one high reading, although, around 31 weeks, (140/80). My midwife ran a 24-hour urine test and blood tests to check my kidney and liver functions. The tests all came back normal. I went back two weeks later for a checkup and my bp was back to normal again, so we thought that perhaps the other reading was some kind of freak occurrence. By the end of that week, the edema had spread up my legs and into my knees. (I did mention this to my midwives, in case you were wondering.) A week later, February 10, 2004, I was a day short of 34 weeks pregnant. I woke up around 6:30 am to go to the bathroom, had a glass of chocolate milk, then tried to go back to bed. I began to feel a touch nauseous around this time. By the time my husband got home at 7:30 am, my back was killing me and I felt extremely hot. He tried giving me a back massage like he normally did when my back hurt, but this time it didn't work. I even tried stretches and a heating pad. Nothing could take away this pain. Around 8:30 am, I first vomited, then again about an hour later. After the second time, I felt excruciating pain in my upper abdomen that felt like a dozen knives tearing through my gut. I wasn't sure if I had food poisoning or what. So I woke up my husband and we went to see the midwives. We soon found out that my bp was sky high and I was spilling protein in my urine. My midwife sent me over to the hospital for more tests where we discovered that my liver enzymes were going up while my blood platelets were going down. I was given a magnesium iv drip to keep from going into seizures and steroid shots in my rump to boost the blood platelets.
I was transferred to another hospital which had a NICU available as my baby would need one being six week premature. In between hospitals, which was an hour away, my liver enzymes continued to go up and my blood platelets continued to plummet. I soon discovered a name to this problem that I was having: it was called HELLP Syndrome, with severe preeclampsia. I'd never heard of HELLP before in my life. Never knew anyone who'd had it before. I now pretty much knew what was going to happen since I knew that the only cure for preeclampsia is delivery of the baby. I underwent a c-section at 7:00 pm and my beautiful little boy, Thomas James, was born at 7:16 pm. He was screaming his little head off and it was the most beautiful thing I'd ever heard in my life. When I first saw him, as they placed his face next to mine after cleaning him up, I thought I'd set my eyes on an angel. Thomas was 3lbs14ozs and 16 inches long. He remained in the NICU for 10 days, then was transferred back up to my home hospital where he stayed for another nine days. I pretty much recovered immediately from the HELLP Syndrome, but suffered from postpartum preeclampsia for a few weeks afterwards and had to take labetatol. I also suffered from postpartum depression and breastfeeding problems as well. I did remover from the postpartum depression, but sad to say, I had to give up breastfeeding after only two months due to a very low milk supply. My son and I have both recovered well physically from the incident and are now healthy. My son is now 10 months old, weighs 19 ½ lbs, and is 26 ¼ inches long. The whole journey has been a very emotional and sometimes tormenting one. Always asking myself question after question about what went wrong. I now know that there probably wasn't much I could've done at the time to change my fate. I know now that there are other women out there who have suffered from this condition with sometimes a much worse outcome than my own. I used to ask myself "why me?", now I say "why not me?" It could happen to any woman; no one is immune to it. Now I just want to help others who have or, unfortunately, will experience what I have gone through.
From Sue
rhino@tdstelme.net After 2.5 years since having my daughter I 've been able to do some research on HELLP. I had a healthy delivery and baby however, about 6 hours post partum things went bad. The doctors were all very confused and unsure of what was wrong with me --- severe epigastric pain and seizures. Thankfully the covering ob ordered a cat scan on my head and I had a bleed on the right frontal lobe. After the second surgery they were able to get the bleeding to stop and after only 2 weeks (thought would be at least 2 mos.) I went home with my husband and 2 week old little girl. I am a walking miracle and thank god every day for that.
Thank you for this web site and the information it offers.
From Michelle
ShelleyR527@aol.com On May 12, 2002 I was diagnosed with HELLP Syndrome. On May 13th I gave birth to my twin boys via emergency c-section under general anesthesia. It was heart breaking that I couldn't even see my boys for over 28 hours because my condition did not get better as rapidly as normal. Luckily, my boys, born at 4lbs. 1oz. & 3lbs. 6oz., were perfect, except small in size. My husband & I contemplate more children, but I fear I may have this problem again & keep pushing it off. I never realized that this site was here & I would love to get the newsletter so that I can be informed on any new updates. Thank you.
From Dana
danabiehl@remax.net I had a premature baby on June 11th, 2004. Katey weighed 1 pound, 13.5 ounces, and was in the NICU for about two months. Thankfully she lived, and is home now, doing wonderfully!! The doctors diagnosed me with PIH, but a family friend did some research and believes that I actually had HELLP. I went to a website that had a link to your website, recommending we ask for a packet of information from you. I would love to get some more information about HELLP, so I could show it to my OB/GYN and maybe not have those complications with any other pregnancies (Katey is our first). Thank you for all the work that you have done in this regard. I cannot imagine the pain that you went through, causing you to begin this society - but I thank you for doing it.
From Lisa
lisadiglio@brandano.com I am a 38 year old Mom that is considering having another child after experiencing HELLP SYNDROME with my first child, three years ago. At full-term I went to the hospital with pain in my back only this was not due to labor. I was experiencing symptoms which they later diagnosed as HELLP Syndrome. My baby was immediately delivered via C-Section and baby was born healthy. Mom on the other hand had quite a time recovering. It took me one week to recover from the effects that HELLP had on my body. (Class I HELLP). I want so much to give my little girl a sister or brother but I am so afraid that I will experience this terrible ordeal again. I have done research (statistics on reoccurrence), gone to our local peri-natal center for a consult and thought a lot about my options. Do you know of anyone out there that has had HELLP with their first pregnancy and successfully had a second or third or fourth... healthy pregnancy without developing this condition again? Not sure which way to turn!
From Mary
ekarius@cardinalcorp.com (Minneapolis MN) I too experienced HELLP last summer. My daughter was born seven weeks early and is right now napping after a lunch of bananas! She is doing beautifully. I would like to learn more about your society and am interested in any local chapters. I live in the Minneapolis Minnesota region. I'm interested in doing volunteer work for you and to become involved here in MN with any other interested women (or men!). Thanks much
Please Help
Members can respond to this e-mail at HELLP1995@aol.com and the answers will be forwarded. I have a question that perhaps you could help me answer. I have a client who has suffered from HELLP Syndrome. The child had to be delivered by a C-Section in the 25th week of pregnancy but survived and is now healthy and normal as any pre-mature baby can be. My client still suffers from swelling and higher than normal blood pressure and she wishes to start a life insurance policy. My question to you is that in your experience, do women have a lot of negative experience with refusals of coverage when they go for a life insurance policy having already had HELLP Syndrome? These cases are not common here and is why I am contacting you.
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