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pregnancy after severe early onset PE with HELLP

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Expand view Topic review: pregnancy after severe early onset PE with HELLP

Re : pregnancy after severe early onset PE with HELLP

Post by bhanunarasimhan » Fri Jan 09, 2004 06:00 am

Thank you all for your responses. I am very glad to have found this website, and look forward to getting to know each of you. I did have my appt with the peri to discuss what happens next time, and while there are no concrete answers as to risk, as a next step we will be doing the blood tests for underlying conditions...in the meantime, I am finding the book "when bad things happen to good people" incredibly uplifting - thanks for sugeestng it Kara!

Bhanu - mom to Angel Shefali (born 25wks, 10/25/03 - 12/18/03, severe PE/HELLP)

Re : pregnancy after severe early onset PE with HELLP

Post by julie f » Tue Dec 30, 2003 11:38 am

Bhanu,

I am so sorry for your loss, I too lost my son this year - he was delivered at 26 weeks in July.

After reviewing my medical records, I noticed that my hCG levels were slightly elevated at 2.52, I guess normal is less than 2.00. I have had a couple consults with different peris and I asked one about it. She said that given my lack of risk factors and my "normal" pregnancy at the time, she would not have given the results a 2nd thought. I am assuming that if the levels are elevated next time though, it will raise some red flags - although I am not sure what could be done differently.

I think you will find many success stories here and a HUGE amount of support. Please know that there is nothing that you did wrong or, that you could've done differently to change your outcome. This is a horrible disease that takes so much from all of us, regardless of all the things we try and do to prepare ourselves for the miracle of a baby. Again, I am so sorry for your loss.

And, I have to echo Gloria, "Let's pray for a miracle."


Julie
Zachary James, 7/22/03-7/27/03, born at 26 weeks due to severe pe

Re : pregnancy after severe early onset PE with HELLP

Post by maxs mom » Tue Dec 30, 2003 10:28 am

Bhanu,
I am so sorry to hear about your loss. I too suffered severe PE early in my pregancy and delivered my son at 25 weeks on 1/20/03. I think I started showing physical signs of PE (swelling) at about 23.5 weeks. Like your baby, my son was IUGR weighing 534 grams (1 lb 3 oz). When he was born, they told me he weighed one pound, my heart sank. I made them double check and they corrected themselves and added the 3 ozs. The nurses said size doesn't matter, but boy, those 3 ozs. made a world of difference to me. Thankfully, after 15.5 weeks in the NICU, our son Max came home and he has been doing well ever since. He is still small, just 15+ lbs and his 1st birthday is just around the corner. But after all he went through in the NICU, it barely matters. He does have some problems, but nothing that doesn't seem like it can't be corrected later (e.g. slight developmental delay, heart murmur, slight near sightedness, etc.) He had a rough go in the NICU, having had 3 staph infections which was actually diagnosed as endocriditis (infection on the pulmonary valve in heart) toward the end of his stay so he had to take 4 weeks of antibiotics before he came home. The infections were probably the scariest times for us. He got so sick, but bounced backed. He was intubated for 10 weeks and came home on oxygen, (he's been off of it for awhile) He does have a lung condition known as Chronic Lung Disease, but as he gets older his lungs will generate new tissue and he will have healthy lungs someday (in the mean while we do everything to insure he doesn't get sick) I guess I am telling you all of this because I know there is hope. Max had a rough time, but he pulled through (and I saw a few other 24 & 25 weekers make it) and it can be wonderful.

Despite everything we went through, I am determined to have another baby. My plan is to start in the summer (I had a classic c-section, so my Peri (high risk OB) wants me to wait 18 months) And while I am a little scared, because I know there is no cure for pre-e I also feel empowered. I know I am going to get the best medical care this time around, and be monitored very closely for pre-e. I will abolutely do anything to carry the 2nd baby to FT, even bed rest for 15 weeks!

To answer your question, my HCG and AFP were normal. One sign though was that at our 21 week ultrasound, my OB/gyn at the time was surprised that Max was so small. At the 8 week US he was normal size. My Peri told me this could be a definite sign there is a problem, and unfortunatley, my regular OB/Gyn didn't think twice about it. Actually, they made a few mistakes managing my care that I feel ultimately made me deliver so early. Sure, I know with the case I had, I would have never made it to term, but had it been managed better I am confident I could have lasted another 2-3 weeks before my body failed. I never developed HELLP, but it was literally right around the corner at delivery time. That is why the Peri delivered Max in an emergency. By the way, I was transferred to the peri's care when my regular OB/GYN finally figured out I had signs of pre-e. So, I know even if I get pre-e next time, I am confident it will be caught early and I will get the best treatment possible this time around and any lenghth of time added to a pregnancy is a plus.

My suggestions for you are:
#1- Get a Perinatologist. If your insurance won't cover it without a referral, hound your regular OB/Gyn until they give you one. You need to have blood screening done to make sure there isn't a underlying condition making you predisposed to pre-e (e.g. lupus, etc) I had the blood taken today, they took 13 vials! If there is something wrong, they will treat that, which will mean there may have been a reason I got pre-e, and may be prevented next time around. Don't let your OB/Gyn make you feel like he can cover everything you need when you get pregnant next. As great as they may be, they just don't have the same knowledge or tools a Peri has. Also, since you had pre-e so early, you have every right to see a Peri.
#2- Don't beat yourself up! As hard as it might be, you did everything you could. My philosophy on what happened to me was this. I blame myself for not being quicker and more persistent in getting help from my OB/Gyn when I started to feel like something was wrong. But I also forgive myself because I know I can't change what has happened and making myself feel worse isn't healthy. I know your pain is so fresh, and it seems so hard to put what has happened behind you. But with time the pain will get better. If you like to read, get the book "When Bad Things Happen to Good People" I felt it helpful.

Please know my prayers are with you. If you ever need to talk, feel free to email me direct.





Kara
Mom to Max, 25 weeker, 1/20/03

Re : pregnancy after severe early onset PE with HELLP

Post by josiah1112 » Wed Dec 24, 2003 02:35 am

Hi,

I'm very sorry for your loss.
I went through a similar experience as you. One of my AFP
levels was high. My OB sent me to a perinatologist who
immediately started checking my baby's spine. - She thought
the baby might have had spina bifida. When everything checked ok,
she mentioned preeclapmsia as a possible future problem. I was
clueless. I had no idea I could actually lose my life or my baby's
life due to this condition. My PE progressed rapidly after week 22
and I had to be delivered at 26 weeks. My baby fought for 22 days
and then passed. It's been very hard on all of us. We had many
dreams for our child. To see him so fragile really hurt (He weighed
530 grams) especially since I always took care of myself thinking of
my baby's well being.

As far as trying again, I made an appointment with a perinatologist
for a consult. This will help my husband and I decide our plan for
the future. My husband does not really like the idea of me trying
again and I am still traumatized. - This all happened to me very
recently. Once I go to my appt. I will post what is shared with me.
I believe making such an appointment would be helpful for you too
since the doctor would be able to review your records. Let's
pray for a miracle-- I would love it if in 2004 they would find the
cure for preeclampsia.

Take care of yourself.

Gloria mom to Josiah 11/12/03 - 12/04/03 PE

As

Re : pregnancy after severe early onset PE with HELLP

Post by akemt » Wed Dec 24, 2003 10:35 am

Bhanu,

I too am sorry for your loss.

As far as statistics of having PE again go, you have anywhere from a 20-60% chance depending on any underlying causes, how early onset was, and how severe. They also say, though, that because you've had hellp it is likely you'll get some form of PE/PIH again, but a less than 5% chance (if I remember right) of getting Hellp again.

Concerning "what went wrong," do not blame yourself. There is no known cause and no real prevention. It is beleived to be something that originates in the placenta very early in pregnancy and we have no control over that.

I have heard someone else mention the AFP as an indicator, but have not had the test myself. There are ladies here who have had successful second pregnancies...I'm hoping to be one of them (7 wks pg with #2). Hopefully they can share their stories with you. This probably will be a bad few days for getting responses though considering the holiday, etc.

Catherine (22)
DH Britton (27)
Emma Margaret (03/02/03) 37 weeks from PIH & oligo

Re : pregnancy after severe early onset PE with HELLP

Post by alimarie » Tue Dec 23, 2003 12:59 am

Bhanu,

sorry to hear about your loss. she really put up a brave fight for such a young and little one! I unfortunately can't answer any of your questions about the screening. I do not have personal experience in having a second child after experiencing pe with the first but hope to one day. I am sure a lot of the women on here will be able to share their stories with you....a lot of them have had successful pregnancies after pe. I pray you all will have a wonderful christmas.

alison

AliMarie---mommy to Madalyn Anne-born at 35 wks due to severe pe (9/18/2001 4lbs. 14oz.)

pregnancy after severe early onset PE with HELLP

Post by bhanunarasimhan » Tue Dec 23, 2003 12:29 am

Hi everyone,
I am new to this website - having recently experienced preeclampsia, I would like to join this community, to share my experience and learn from others.

We had a baby girl at 25 weeks gestation on 10/25/03 after I had a sudden onset of severe PE with HELLP - our baby was severely IUGR (440 gms, or 15oz). She fought bravely in the NICU for 7.5 weeks but is now an angel. The only clue we had to a potential problem was the triple screen test results around week 16 - elevated HCG and AFP levels that the genetic counselor said was indicative of a placenta problem rather than either Downs or Spina Bifida. I had no other obvious risk factors (i exercised regularly, ate well, took my vitamins, etc) and am still searching for what went wrong...with my pregnancy, with my baby...

Has anyone else had experience with the triple screen as an indicator of PE/HELLP? Has anyone else been able to successfully have a baby after such an early onset of severe PE/HELLP?

Thanks,
Bhanu

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