Seeking People Who Have Had HELLP Syndrome with Their Pregnancy

Updated on January 31, 2011
L.D. asks from San Antonio, TX
17 answers

My brother-in-law(Mike) and his wife(Erica) lost their 7 y/o son to an asthma attack this past February. It was their only child. Erica had a rare condition with her pregnancy known as HELLP syndrome, which is a severe form of pre-clampsia. This condition is characterized by breaking down of red blood cells, elevated liver enzymes and low platelets. Due to this condition, which put her and her son's life at great risk during the delivery, as well as being diagnosed with lupus 1 ½ years later, they opted not to have any more children.
Since that time, they have learned that having more children after having HELLP syndrome may be a very realistic option as long as they are carefully monitored. Mike and Erica would like to be able to speak with as many people as possible who have experienced this and since it is rare, it is difficult to find such people.
So I am posting this to see if anyone has either gone through this (or knows someone who has) and if so, if they would not mind sharing their experience. Any feedback would be appreciated. Thanks so much!

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M.F.

answers from Houston on

I have no experience with HELLP, but I will tell you the doctor to be with is Karolina Adam. She's a high-risk OB and people all over the country go to her. I went to her with my first pregnancy and she was incredible. I would suggest Mike and Erica speak with her and she will give them all the information they need about it. If it can be done, she will tell them. I would trust her with my life. And I did!

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D.G.

answers from Houston on

I'm so sorry for the loss of your nephew.

My grandmother probably had PE & HELLP with her first pregnancy- at the time they called it "toxemia" and "jaundice". In her second pregnancy she had no complications, and she was later diagnosed with lupus.

The pre-eclampisa foundation a good source of info and support (they have a HELLP and underlying disorders forum). http://www.preeclampsia.org/

They might want to schedule a pre-conception consultation with a maternal fetal medicine specialist http://www.smfm.org/. A doctor specializing in high risk pregnancies would know more about possible treatments such as blood thinners and be able to give them a better breakdown of the odds of a normal pregnancy.

I've had PE twice but not HELLP.

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S.M.

answers from Austin on

I too had it with my last. I didnt have it with my two previous pregnancies with the same dad which is rare but with the RIGHT doctor I think things could go fine for her. I have also heard from some that it is generally not as bad with next pregnancies. I guess I got knocked up by the mail man and I didnt know it...lmao. I send my reguards to your friend that is horrible news and my prayers are with them. If she needs to talk I am hear.

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K.M.

answers from Houston on

L.,
I had HELLP with my last pregnancy. Since I had pre-clampsia with all three pregnancy I had my tubes tied. I'm sorry to hear about your brother-in-law and his wife loosing their son. If you have any questions please fill free to ask. I don't know much about HEELP except very few women go thru this. Fill free to email me at [email protected]____.com

K.

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B.C.

answers from Austin on

Hello: I had preclampsia and an emergency c-section at the end of 28 weeks while starting to have a stroke b/c of the preclampsia (I started bed rest at 6 weeks into the pregnancy and weekly monitoring b/c of the preclampsia and gestational diabeties). We could have tried for another biological child; the doc was clear that while I had the severe preclampsia and there would be a greater chance I would have it again I could also have a "smooth sailing" pregnancy. We opted to adopt our second child b/c I just didn't want to risk ending up leaving my first motherless in case the pregnancy didn't go well or suffer even worse consequences than I did from the prior pregnancy and end up a "veg" and be such a burden on my husband. So through adoption God managed a way for us to complete our happy family of 4! I can't even imagine the pain your family is feeling due to the loss of their child so my thought is that perhaps they could gather all the medical facts about the risks and then speak with their pastor/minister to help sort it all out and get clarity on what's really important for them (having a biological child or just having a child to love). My heart goes out to them and I wish them all the best in their journey.

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M.C.

answers from Longview on

Dear L.,

My daughter had twins at the age of 38 and developed HELLP.
The twins were delivered by c-section and were fine. The mother, our daughter ,could not stop bleeding and the delivery was followed by an emergency hysterectomy and after 23 blood transfusions the mother lived. The babies were not affected by the syndrom and are now 15 years old.

My advice is to find out if this is likely to happen again to your sister-in-law if she becomes pregnent. If it is the gamble is to great, she would be safer to adopt.

I am a 78 year old grandmother.

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M.S.

answers from College Station on

I just got back from the ER w/my son for an asthma attack. The first thing I did is read this and I couldn't keep from tearing up. My prayers are w/them.

Blessings,
M.
Mom to 5 Wonderful Kids
www.4MyChildrenSake.com

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M.S.

answers from San Antonio on

I found the following sight with my last pregnancy...I was being monitored for pre-eclampsia...it is a great resource of other women who have had HELLP and gone on to have other children.

http://www.preeclampsia.org/forum/active.asp

{{{{hugs}}}}

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P.H.

answers from Austin on

I had HELLP syndrome hit me fully in the 37th week of my first pregnancy. I was totally ignorant to how serious it was, and still guess I am, because what your inlaws have gone through is very painful. I had had that ache in my gut i thought was indigestion at the time, but was really liver failure. My baby was induced after a "you're going to hospital now" visits to my OB (again, I knew my blood pressure was high and my platelets had been going down for many weeks at that point)but it was a safe and happy vaginal birth. I even got my natural childbirth experience using hypnobirthing! It was noted by the nurses that I was an excellent candidate for not getting an epidural because of the platelete issue.
I had two more healthy pregnancies after this one. My middle pregnancy I had some low blood plateletes, but no blood pressure problems and went into labor naturally at 40 weeks. My third pregnancy I had very low blood plateletes again and had to take steriods the last month or so and my doctor couldn't let me go longer than 38 weeks, but the birth was perfect and fast!
I was told from the beginning of my second pregnancy that the chances of pre-eclampsia again were really low.
Don't know if this is helpful, but that's my story. Best wishes!

P., mom of three boys 7,5 & 2

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D.T.

answers from San Antonio on

Hi L.,

I am not fimilar with HELLP but I found a site that may help Mike and erica. Here is the site www.hellpsyndrome.org D.

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M.F.

answers from Austin on

L.,

I'm so sorry to hear about their loss. I can't even IMAGINE the heartache they've gone through.

I've had HELLP syndrome twice, with both my girls (needless to say, we've stopped at two). The first time started out as a sharp pain up under my ribcage (kind of like the gas pains you get when your jeans are way too tight). We thought it was the baby growing, and digging her heels in up there, but later found out it was my liver. I had no swelling, no high blood pressure (until 2 weeks after that pain started, and I went in for my bi-monthly exam), none of the usual telltale signs. After an emergency c-section under general anethesia, my first was born 6 weeks early, and I didn't get to see her for two days, because I was rendered immobile by magnesium sulphate. I was released 4 days after her birth, and she came home after two weeks in the NICU.

I was told that it's VERY rare to have HELLP in subsequent pregnancies, and if it occurs, the symptoms are far less than the first time around. At around 30-weeks, we did some baseline bloodwork, and I think I was around 32, when I felt "the pain" again. It must have acually been gas bubbles that time, because my bloodwork came back fine. Week 35, and the pain was back. This time, the bloodwork showed that my liver enzymes were elevated, so our OB told us once again, "You're having a baby today." This time my platelets were not as low, and I was able to have a spinal.

Unfortunately, my 2nd had breathing issues, and was transported to another hospital with a better NICU facility. I was still stuck in the hospital for 2-3 days, but luckily I was able to see and touch her before they whisked her off, and she as only in the NICU for two weeks, as well.

My email address is [email protected]____.com they have any questions, or would like futher details about my experience(s), I'm happy to share. If not, they still have my deepest sympathy, and I wish them well.

M.

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H.T.

answers from Victoria on

hello I had Hellp syndrome and they did not tell me I should not have any more children but you are at a greater risk to get it again.That is what I was told after I had my daughter.You just have to be careful.

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E.G.

answers from Los Angeles on

hey sorry to hear about there loss. my son in now 5month old. but i did have hellp syndrom, my memory of it happened so quickly i routine bloods done, 4 weeks later at an antenatal apointment i recieved the results and they indicated that i had low platlets i think it was 80, at this point i had high blood pressure constantly being sick, blurry visoin, so i went into hospital who did more tests they found i had a b12 defficiancy and folic defficiancy they sent me home on the understanding i come back 2 days later for b12 injection, so i did i arrived at 9am had the jab the doctor decided to do more tests well this lot of bloods left a bruise on my arm and it covered the whole of my arm, my bp was very high i had red urine 3+protine in urine they moved me to the beds then all of a sudden i had team of specialist round me and i was told baby was comming today. so they took me straight to delivery broke my waters and started me of with a drip they told me that i couldnt have a n epidural and if i needed surgery id be put under, they also asured me the have ordered a platlet infusion cos they had dropped to 22. anyhows 4 hrs later my son was born 10lb 10. then i was taking upstairs i had to stay in for a week but it seemed that having my son was the only cure my liver started working my platlets started to rise i did have anemia bu on pill for that. it was a very horrid experiance, but my doctor did advise me not to have any more children as it can potientally be a life threatining disease, i hope this helps

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K.N.

answers from Houston on

L.,
I am very sorry to hear about the loss of your bother in law and his wife's son. My sister experienced HELLP syndrome with her first pregnancy. Her OBGYN missed all the warning signs and we almost lost her and the baby. It was very serious. But since then she has gone on to have another baby and the pregnancy was perfectly fine. She was monitored much more closly this time and automatically had a C-section. I am sure if they find the right doctor who will monitor her and make her feel comfortable in her desicion she will be fine. My sister's two children are now ages 5 and 3 and both are very healthy and active. I hope all works out the best for them.
K.

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J.B.

answers from College Station on

I had HELLP with my first child and have had 4 more pregnancies after that all without incident. Obviously I don't know what other factors may be involved but that's my story. I have 3 boys and a girl now and I was healthy as could be during the other pregnancies and deliveries.

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J.R.

answers from Houston on

Hello L.!

I had HELLP almost 3 years ago. Feel free to contact me at [email protected]____.com

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T.C.

answers from Houston on

Im sorry for your BIL's loss.

I had pre-eclampsia with my firstborn at an early age. She is completely healthy and has straight A's and B's. Great kid.

I ended up with HELLP with my son (2nd preg) and had an extended stay in the hospital (VBAC and 4 day stay). I was induced 3 weeks early. My son is pretty healthy, but he has school issues. He has reading problems which could be from a list of anything. Docs arent sure. They tried diagnosing him with Spec Ed, but we tried other options. They finally just said he had Short Term Memory Loss -- 5 minutes. Like asking him to get up and go to the fridge for a glass of water, standing up and half way there going "what?" Its minimal. One of the causes is pre-e or HELLP.

I went on to have another preg, my 3rd. Completely healthy and fine. I had no pre-eclampsia issues and the baby was healthy and delivered healthy at 39 weeks.

I am pregnant again. I have a great OB this time, who has been watching me every 3 weeks instead of the 4 week guideline. I have had several ultrasounds to monitor me and the baby. My OB will start monitoring me very closely begining at week 30 to test for liver and kidney functions to make sure if pre-eclampsia persists yet again, we can catch it and keep it at bay.

Your BIL's wife can have a healthy pregnancy and deliver a healthy baby with the RIGHT OB care. Have several OB consults and find the right OB that will monitor her more closely earlier in the pregnancy.

Best of Luck!

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