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From Janine
Janinefitzy@aol.com I lost a baby boy at 26 weeks gestation to severe HELLP. Since the delivery in August I have had almost constant post partum bleeding. I have had problems for five months. I was just wondering if anyone else out there has had the same or similar problems with post bleeding. I went back on the birth control pill and it didn't help. I have since stopped the birth control pill and that hasn't helped either. This week I am going to try to go back on the pill to get this bleeding under control. I have been to several doctors and had four internal and external ultrasounds and everything comes up fine. Any advice? Please help me!
From Kurt
Kkbmadvig3@aol.com (Chula Vista, CA) Kathy is in the hospital with pancreatitis. They are doing a bunch of tests on her and she wanted to know if Dr Easterling has ever heard of this with HELLP survivors? Thanks. (Editor's note: At this writing, Kathy is home from the hospital. If there are other readers of our newsletter who have developed pancreatitis after having HELLP, please let Kurt and Kathy know. Also, they would like to hear from anyone who can recommend a good maternal/fetal specialist in the San Diego area.)
From Karen
KPowellNJ@aol.com (Princeton, NJ) I was wondering if you know of anyone who has had HELLP as early as me (28 weeks) and has had another pregnancy? I went to the doctor and they said that they did biopsies on my placenta and it was 80% dead when my daughter was delivered. They said my chances are high for this to happen again. I would like to find someone who has HELLP as early and maybe had another pregnancy. I am very afraid but want another child so bad and adoption is so expensive. Also, the doctor said that it is possible to have the fluid retention in other places than the body, like in the lungs and brain. This also worried me. Have you heard of any cases like that? Thanks so much for any info you can give.
From Kelly
kbdmoy@cox.net (Glendale, AZ) Greetings everyone from sunny Arizona! Hope you all had a joyous holiday and Happy New Year. Our kids are growing so fast. Dylan, my HELLP baby, three years old now is continuing to thrive in Developmental Preschool. He loves it and is speaking more and more clearly each day. Kathryn is eight months old. Time is just flying too fast. I cannot believe she will be a year old in April. She is a very happy and busy girl, crawling since seven months old and doing everything she should be. You'd never even know she had skull reconstructive surgery. Anyone out there needing info or support on speech delays or craniosynostosis, I am here for you. Please feel free to e mail me any time... KBDMOY@cox.net I have a question I'd like to throw out to you all. My husband is totally fine with having only two children and is ready for a vasectomy, I have to agree with him due to the complications we faced with both our kids but deep down I still feel like I would be willing to have one more child. Anyone else go through this and how did you cope, compromise, etc...? Thanks a bunch.
From Debra
debra.wilkins@ntlworld.com (England) It's been a while since I last wrote, I have contacted you in the past about my son Jake. He was born in March 1999 at 36 weeks and weighed 4lb 14oz due to HELLP syndrome. In October we found out that Jake is 80% deaf in both ears, we have been fighting for this diagnosis for the last 18 months even though he has failed nine hearing tests in succession. He has now been given hearing aids but when they put them in his ears at the hospital they had set the volume too high and frightened him. Now he won't let you put them anywhere near him. They say that his deafness isn't anything to do with HELLP because there is deafness on my husband's side (though Jake is the youngest to be affected). Could HELLP have had anything to do with this? If anybody else has experienced these problems please contact me.
From Michal
hoppy@netvision.net.il (Tel Mond, Israel) I found your last letter very touching. I definitely feel like I have been through the "tortures of the damned"....and am still trying to see the light at the end of the tunnel. I lost my baby 10 months ago (after struggling to fall pregnant), and am trying again now, but have been unsuccessful with the fertility treatment so far. I have had to deal with having had HELLP twice, and with struggling to fall pregnant, and that is a LOT to deal with. Your site offers so much encouragement and hope. I just wanted to thank you all.
From Vicky rh006d4382@blueyonder.co.uk (Essex UK) When we lost Tom my husband Rob updated our website to incorporate details and photos of Tom and we too started fundraising for the neonatal unit which looked after Tom. The address is
www.robhunt.co.uk . We are aiming to buy a brand new ventilator so as to help other babies. We started our fundraising in August 2002 with a sponsored walk which raised approximately £12,000. Since then we've had a few other events which have also had a fantastic response. We're going to continue with our fundraising efforts this year with a garden party. The intention is for us to sell tickets at £10 per person and we'll provide food and entertainment and people will bring along their own drink, but as you well know the weather here isn't that great so its quite difficult to plan too far in advance. We're hoping to hold the party sometime in the summer months.
PS: I forgot to mention that my friend Tracy has started a website for people affected by Pre-eclampsia and HELLP Syndrome. It's still quite basic but we're always trying to find more info to add to the site. We have weekly chats on Wednesday evenings at 8pm (UK time). Please feel free to join us.
EDITORS NOTE: Please see WITH DEEPEST SYMPATHY
From Sandra sandyscouter@hotmail.com (Salt Lake City, UT) A nurse who works in the NICU at University of Utah hospital says she knows who you are! I waited on her at the deli yesterday. That was so good to know a nurse way out here in Utah is aware of your work!! She said she wished regular doctors would be more aware of HELLP then their job wouldn't be so difficult. Your work is growing and spreading out and more and more people are recognizing symptoms! I am certainly glad you were there for us a year and a half ago and helped save my daughter and baby by encouraging us to go with our feelings that something major was wrong and change doctors. I truly believe with the way her liver enzymes were rising, that they might not have made it.
From Michele DeafieBornert@aol.com (Grandville, MI) I am the mother of three small children. My first pregnancy was fairly non-eventful except for PIH (pregnancy induced hypertension). I was on bedrest for six weeks and then the baby was induced due to low amniotic fluid. My second child was much worse. At 21 weeks gestation I developed severe pre-eclampsia and was hospitalized and placed on magnesium -- to be for the duration of the pregnancy. That didn't take long. At 24 weeks gestation I developed flu-like symptoms and then an awful pounding ache in my upper right quadrant. Our son, Jacob, was delivered by emergency C-Section and weighed 1 pound, 4 ounces and was 12 inches long. Apart from a hematoma that developed, I rapidly recovered. Jake was in the NICU for four months on a ventilator. He had a heart PDA that almost killed him, two hernias, severe ROP, BPD, apnea, and 5 blood transfusions. He also developed a staff infection only 10 days after being released and his blood became toxic. Jacob is now four years old and a complete miracle! He wears glasses (if we can make him keep them on) and he does have a malformation of his left hip due to osteomylitis. He has tubes in both ears and is slightly developmentally delayed (mostly in speech and comprehension). But he's a cute boy and is average size. Six months after Jacob was born (two months after he was due), I unexpectedly became pregnant for the third time. I was immediately high-risk. At 11 weeks, I developed mild pre-eclampsia and was supposed to be on bedrest (yeah, right. With a two-year-old and a son on life support at home). I never developed HELLP, but I did have preeclampsia and, even worse, I lost all of my hearing. They think that the pre-eclampsia, instead of attacking my liver, attacked my auditory nerves. At the age of 26 I became completely and permanently deaf and we use Sign Language to communicate. Natalie was induced at 34 weeks due to low amniotic fluid. She was intubated for one day, but that was nothing compared to Jake's 3 1/3 months! She came home 10 days after she was born and, after working with Jacob, she was a piece of cake! I am probably the only person to become deaf due from pregnancy complications. I would like to help other women facing HELLP syndrome and its consequences. I live in Michigan.
From Andrea
treed0@worldnet.att.net (Georgetown, KY) I lost my son in October 2002 due to HELLP and this Society is continuing to help me get through the terrible ordeal. My husband and I are also planning on trying to get pregnant again in April and I am really concerned about finding a doctor who is very familiar with HELLP syndrome. Does anyone know of a good high risk doctor in the Lexington, Kentucky area? I am not sure that my OB will give me the kind of care that I think that I need after losing a baby to HELLP. Also is there anything that I need to do now to get ready for another pregnancy?
From Norma connie_aldana@yahoo.com (Colombia, South America) I'm receiving your news monthly and it helps me to keep dreaming and feeling that after my first pregnancy (my baby girl was born at 34 weeks and now she's a beautiful 20 months girl!), my second child is going to be okay. My husband and I decided that it's time to have our second baby. Please, keep us in your prayers.
From Denise
Denise.Navarrete@cardinal.com (Albuquerque, NM) I was just informed of a genetic blood defect that I have and was wondering if your daughter or anyone in the society was ever tested or can say that they also have. The defect is called Factor V Leiden. I actually found a web site that linked it to HELLP and was wondering how many other women that develop HELLP have it.
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