More Concerned than before

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

More Concerned than before

Postby kbielec » Tue Jun 22, 2010 11:15 am

I met with my MFM yesterday to have a preconception consult. She was so helpful, and I appreciated her hour of time. Having said that I am more fearful, more concerned, more unsure about trying for another baby than I was before.
Going into the appointment I knew - I had lost my baby 2 years ago when I had HELLP at 25 weeks. And I knew that I had one gene (heterozygous) for Factor V Leiden

What I learned...

First my BP was 128/79 which she said is normal isn't that a little high?

I learned my 24 hour urine was GREAT three weeks ago and showed my liver and kidneys to be in good shape

I learned that during my ICU stay two years ago..."You lost very little blood with the Cesarean itself but your platelet count and other coagulation labs became quite abnormal (something called Disemminated Intravascular Coagulation or DIC) AFTER delivery, which can happen with HELLP syndrome. This led to the transfusion described" this once I looked up DIC was SCARY to say the least...

A pregnancy in 2000 was complicated by severe fetal growth restriction (FGR) at 27.4 weeks. She underwent an indicated cesarean delivery of a male infant weighing 615 grams, who has some physical and mental handicaps. The second pregnancy in 2008 was with a different (and current) husband. That pregnancy was complicated by severe and early FGR at 24 weeks, HELLP syndrome (AST as high as 1076) and laboratory evidence of DIC requiring transfusion with PRBC, cyroprecipitate and platelets. Of interest, uteroplacental blood flow was normal at 20 weeks suggesting normal placentation, but a creatinine clearance was abnormally low at 110 mL/min. According to Ms. Shriver, genetic screen results were normal. She delivered of a female infant weighing 400 grams, who died 2 weeks later from complications of extreme prematurity. Pathology report revealed a normal placental weight (158 grams) with focal infarction and fibrosis. Because the clinical presentation was strongly suggestive of antiphospholipid syndrome (acquired thrombophilia) or some inherited thrombophilia, appropriate testing was requested. These results were remarkable for heterozygosity for Factor V Leiden and MTHFR gene mutation (C677T). The former is of much more concern than the latter, which is seen in 40-50% of Caucasions.
Her past medical and surgical histories are otherwise unremarkable

And I learned...
We discussed the likelihood of recurrent preeclampsia and developed a management scheme for a future pregnancy. The recurrence rate may be as high as 20-40% but in her favor are two factors. 1) An underlying diagnosis that is potentially treatable has been identified (FVL heterozygosity) and 2) this pregnancy is fathered by the same man has her last. Below are summarized my recommendations for a future pregnancy:

1) Start folic acid 1 mg daily now
2) To start daily baby ASA and Lovenox 40 mg daily at conception
3) Early ultrasound for dating and viability
4) Patient will use home blood pressure cuff in future pregnancy and inform us of her home BP’s
5) Baseline labs/24 hour urine in the first trimester
6) 12 week first trimester screening
7) Repeat labs /24 hour urine in second trimester
8) 18 week anatomic survey
9) Uterine Dopplers at 20-22 weeks though as these were normal in her second pregnancy would interpret with caution
10) Serial ultrasound/lab tests after 22 weeks, frequency to be dictated by circumstances but likely on Q2 week range.
11) APT starting in third trimester, dating to be determined by how pregnancy is going
12) If all going well would consider switch to unfractionated heparin at 36 weeks
13) Repeat CD at 39 weeks if all is optimal with low threshold to do earlier pending clinical situation
14) Will need LMWH for 6 weeks post-partum.

SORRY SO LONG...

I am no so much more unsure (ALTHOUGH I got the green light to try again from here)- it appears to the NON-medical student (me) that I have a lot of "issues"...and I don't know really what my chances are of being successful...guess I am just looking for some feed back from others that have been through this...
What is MTHFR and why did nobody tell me that came back positive for one gene 2 years ago?
I am so frustrated...and scared...and wanting a baby...(tears)...
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Re : More Concerned than before

Postby brismom » Tue Jun 22, 2010 04:53 pm

I am in the same boat as you. I, too, received the green light from a specialist but am scared. My HELLP was post partum and my daughter was IUGR - otherwise fine. I have other health issues which shouldn't stand in my way but I am too scared right now. My frienhas the MTFR gene mutation and delivered 2 children without any problems. It seems as though your specialist does have a great game plan laid out for you so you are in great hands. Good luck!
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Re : More Concerned than before

Postby sam10 » Tue Jun 22, 2010 06:01 pm

I don't have much to add to your medical report, but I understand how concerned and scared you are. I am scared too.

It seems to me though that you have a good game plan for a subsequent pregnancy!

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Re : More Concerned than before

Postby l412angel » Tue Jun 22, 2010 06:09 pm

I have FVL too. What did she say the Folic Acid was for? Is it over the counter or does it have to be prescribed?

I totally understand how you are feeling. The way I looked at it was ok I have FVL now...so we KNOW there is something wrong...we know how to manage it...if I dont try again...I will never know if a baby was possible. Only time will tell. I think its actually good they know now whats wrong. That way they can be on top of things!
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Re : More Concerned than before

Postby tree » Tue Jun 22, 2010 06:19 pm

I would take comfort in the management plan for your next pregnancy. She gave you a 60-80% chance that it would go smoothly, which is pretty good. You could still have complications, but your MFM sounds more than prepared to help you through it. That said, it is still scary. I didn't get quite as sick as you, but I was still petrified when I got all my labs and understood how sick I had been. It has been 6-8 months since I received them, and I still get a little queasy when I think about it. I take comfort in the women who have had easier second pregnancies. It may not happen for all of us, but the fact that it happens for some gives me some courage to think about trying again.

Talking through the results and the implications of the results here helped me a lot. I hope we can help you through it. I am nowhere close to trying for another baby, but I know that I could be some day because of this place.
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Re : More Concerned than before

Postby jules2 » Wed Jun 23, 2010 11:27 am

Hi Katie,

I understand how scared you are; I am terrified too. I am now 13 weeks pg and if you do get pregnant again you will deal with the fears because at that point you basically just have to; the vascillating about making the decision can be even harder IMO. The early weeks I was terribly scared and fearful; at the moment I feel better, but I think that will come back to haunt me post 20 weeks, depending on how things go.

Your BP is around the same as mine; its ok but ideally the systolic should be <120. But BP is variable and if you had that taken in the clinic, it would probably be lower for you at home. I was getting readings 130s/80s in clinic, but when I had 24 hour monitoring done it was 125/77 which is fine, even if not totally ideal. My specialists tell me my BP was "blameless" in my pregnancy with Alice.
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Re : More Concerned than before

Postby kbielec » Wed Jun 23, 2010 02:58 pm

I am sure the nerves of the pending discussion had something to do with my BP being a little higher than normal...I intend to make a point of checking it when I am not fearful of a conversation at the doctor.
I must admit I agree with our opinion that making the decision to concieve is WAY harder than I thought it would be. I actually told my mom last night that I wish it was "an accident" that I got pregnant...then I would just face it head on...and not be scared to try. Seems crazy I know!
Thanks for all the responses...

Laura - the Folic Acid is for the MTHFR that they FINALLY told me yesterday that I had...
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Re : More Concerned than before

Postby sezza » Thu Jun 24, 2010 00:51 am

Hey
A bp of 128/79 is really good. The baseline for bp is 120/80. In saying that it might be best to find out what your normal is. Mine is usually around 110/60-70.
The systolic (top) number is what is happening when the heart is pumping and the diastolic is that is happening when the heart is resting. They will keep a closer eye on the bottom number and the top will usually go higher when you are stressed. In saying that if they are both super high then there is something very definitely going on.
Sounds like you have a pretty comprehensive plan. I found that my bp was higher in my first trimester (am now 25 weeks) but that it settled.

Don;t they start everyone on folic acid. I got told by my gp to start it at least 3 months before conception but I have also heard that taking one b vitamin at larger doses can put the other b vitamins out. I just take it with my multivitamin.

Good luck wit making the decision. It is a tough one. It was only the wanting to have a sibling for my first child that we have decided to go back but I can tell you there will DEF not be a third!!!
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Re : More Concerned than before

Postby kbielec » Thu Jun 24, 2010 08:59 am

Took my BP at home last night and this morning and it's down...117/75 and this morning was 125/75...
Started my 1 a day baby aspirin and my folic acid vitamin and my prenatals yesterday. AF is due next week and we are doing to wait a month and then start TTC...gives my new drug/supplement regiment a chance to get working! Fingers crossed, mixed feelings of happiness and being terrified...but here goes nothing.
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Re : More Concerned than before

Postby brismom » Sat Jun 26, 2010 09:38 am

I can understand your concern. My daughter is 8 and the thought of getting ill again and risking my life makes me feel like I should stop while I am ahead. However, I think if I didn't have her and really wanted a child, it would be worth the risk. I think the hard thing with HELLP is being misdiagnosed so your doctors will be looking for everything and catch it quickly. The stats are on your side as well. Good luck and God bless!
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