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Note:
If you have lost a baby, a friend, sister, or spouse as a result of HELLP syndrome and you have not asked us to include them on our memorial list, perhaps this would be a good time to do so. There will be a memorial service at our June 18-20 HELLP Symposium. Please contact board member Julie Oughton
t.oughton@comcast.net to add your loved one to our memorial list.
From Lindsay
RLLLButler@aol.com (Maple Grove, MN) I was wondering if anyone else who has survived HELLP has lost their hair in clumps and has memory loss really bad. My stomach is still not good or what feels to be my stomach). I had 16 bags of plasma put in me. Did anyone else have to have this done? Did anyone vomit blood after having their baby and was suffering HELLP syndrome? My body looks like I am a burn victim because of the stretch marks. I normally weight 100 pounds. I weighed 137 when I had my son and then went up to 175 afterward. Did that happen to anyone else? My doctor is really curious if this has happened to anyone else also and that is mainly why I am writing and asking. This is all so new to him that he is really interested to know what post problems others have had and I am as well. Please, could you post my email address for others to email their answers to these questions to me.
From Ebenezer Daniel
piidev@hotmail.com (Aurangabad, Maharashtra, India) We are organizing one of the largest conferences in the world January 6-9, 2005 and you and your members are invited to attend it. Please view our site
http://www.aicog2005.com for more details. We will be covering HELLP syndrome , preeclampsia and the like.
From Jackie
jensen98@dcdi.net (Chubbuck, ID) I had HELLP syndrome when I was 25 weeks a long in my pregnancy. Our son survived, but I wanted to find out if there are any long term effects on the mother. My calves hurt to touch, my thighs are tender, but I don't have any blood clots in my legs. The muscles in my legs swell, and cause a great deal of pain. Is this a side effect of HELLP syndrome? Please let me know.
From Kim and family KimberlyPhillips@wmconnect.com (Gilmer, TX) We took Grant yesterday for his NICU checkup in Shreveport and it was a great one! They checked him out and said "Let's take him off the oxygen during the day and only have him on the oxygen when sleeping, napping or while riding in car seat!!" We now have to take the monitor wherever we go so that we can check his 02 SATs every so often while awake and off the oxygen, but just being off the oxygen while awake is a blessing! We got home and took him off the oxygen and he did great! (as long as he is awake, when asleep his SATs drop and he NEEDS the oxygen) He had his first bath with no wires and no tubes last night and boy did he have fun! He splashed, giggled, got face completely wet and we didn't have to worry about tape coming off or water getting in the canula. Grant is just such a blessing in our lives and we are so fortunate that he has done so well after such a rough start! Thank you all so much for all the prayers because they have been answered!
From Michelle
r_bakeri@bellsouth.net (Boca Raton, FL) I have received your information package in the past about HELLP syndrome. I delivered prematurely due to preeclampsia and HELLP in 2000. My daughter, Kelly, was born at 24 weeks gestation and weighed 1 lb. 6 oz.. She remained at Joe DiMaggio Children's Hospital in Hollywood, FL for 95 days. She developed Jaundice in the hospital (very common), ROP stages II and III - fortunately it corrected itself; had numerous blood transfusions. I had all the classic preeclampsia symptoms (protein in the urine, swelling and high blood pressure as well as severe headaches, seeing spots and pain in my chest down my back and running down my arm - which is what brought me to the doctor early). After spending time in the triage and testing for preeclampsia - 2 hours later it was confirmed severe and by the end of the night - my blood pressure hit the roof (198/100), all my organs shut down and my daughter's heartbeat stopped. They immediately performed an emergency c-section. Today she is healthy and strong; and I am back to normal - taking a blood pressure pill only up until my post-partum visit to the doctor. Thanks for letting me share my story.
From a Friend
Holdstockc@aol.com Have just been looking at your web-site with interest as I developed HELLP in my first pregnancy. I showed signs of preeclampsia at about 24 weeks with severe edema and was signed off work indefinitely at 27 weeks. After 3 weeks of almost daily visits to the day unit at the local hospital I was admitted and told that I needed to be delivered by emergency c-section as things had rapidly deteriorated and so 2 days later delivered a beautiful little girl called Bethany who weighed in at 1 kilo (2.2lbs) exactly. The next three days are a huge blur to me - I don't remember much apart from being told that "my baby was very small and not to expect too much". She spent 8 weeks in SCBU, which was an emotional roller-coaster, not knowing if there was any damage to her. Well that was 4 years ago now - my daughter celebrated her 4th birthday last week and she is the brightest, happiest, kindest little girl I know with, thankfully, no disabilities whatsoever. She had hospital checks with various paediatricians for 1 year before she was discharged and the orthoptist discharged her mid-last year with near- perfect vision (she had ROP grade 2). She is one of my success stories. The second, is my son Nathan. He was delivered by elective c-section last August. I made it to 40 weeks exactly with absolutely no signs of preeclampsia or HELLP - although I did develop gestational diabetes this time! I was very nervous of getting pregnant again as I was terrified of history repeating itself, but my obstetrician was brilliant. She saw me monthly, and then fortnightly from 30 weeks and gave me confidence in my pregnancy. I just wanted to let you know of my experience, if nothing else to encourage other HELLP sufferers. Do not give up hope.
From Leslie
MLCinOP@aol.com (Overland Park, KS) Now that I've had three pregnancies with HELLP/severe preeclampsia (delivered at 23 wks, 30 wks and 32 wks), I was wondering how many others are out there, who've had this disease with every pregnancy? My perinatologist said it does happen, but it rare. I just wondered how 'rare' is this?
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