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4 years later and I'm feeling blue....

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

4 years later and I'm feeling blue....

Postby amyjo_000 » Tue Apr 10, 2012 03:36 pm

by amyjo_000 (3 Posts), Tue Apr 10, 2012 03:36 pm

It has been 4 years since I was rushed into an emergency c-section to deliever my baby girl at 32 weeks due to HELLP Syndrome. When her first birthday rolled around I went into a deep depression thinking that I could never have another baby after always wanting 2 or 3. I then came to a point where I was okay with the idea of never having another child or so I thought I was. It's been 4 years since my terrifying experience and I'm to the point where I know for a fact that I'm not okay with not ever having the chance to have another child. I talked to my mother about it (I confide in her with everything) and she is very worried about my "baby fever". So today I'm feeling blue and robbed of the opportunity other women get to experience time and time again.

My story....

At 32 weeks my mother-in-law took me to the hospital because my feet had become so swollen that I couldn't wear flip flops. I checked my blood pressure and it had sky rocketed. Before this I had not had any trouble with my pregnancy. The doctors immediately admitted me to the hospital and started doing blood work. They decided to put me on magnesium sulfate so that I wouldn't start having seizure. At this point no one is telling me what's going on. Finally that evening the on call doctor came in and told me that my platelet count was low so they were going to keep me so they could monitor it. The next morning after one blood draw they came into my room and said they were mediflighting me to a larger hospital that had the capabilities to deal with the issue better than the one I was at. What issue? No one would tell me what was going on. After spending two days in the hospital (the one I was transferred to) a doctor comes in the room and tells me and my husband that the baby has to be delievered immediately because my platelet count is getting too low. He gives us the option to try a vaginal delievery but he doesn't reccommend it because my chances of bleeding to death are high. So off to the surgery room I go. Everything is happening way too fast and still I have no clue what is going on. During the c-section the doctor asks me if I want my tubes tied. Is this a joke?! No! I don't. This is my first baby. Why would I want my tubes tied. I felt like I was missing something. As soon as my precious baby was delieverd they rushed her to the NICU. I didn't even get to see her face. I felt like they just took one of the most precious moments of my life away from me. Every other mother gets to see her newborn baby. Why not me? The next three days were excruciating. After the delievery they kept me in a trama room so they could monitor me closely. In the middle of the night a nurse woke me up and explained to me that a doctor was on the way. I was hemorrhaging and my uterus wasn't contracting. They were unable to take me to surgery due to my platelet count so they had to do everything right there. I have never felt such an agonizing pain in my life. I wanted to die. After that my husband nor my mother left my side. The next day (two days after deliever) I stopped breathing. They resuscitated me and hooked me up to an oxygen machine that monitored my oxygen levels. I can remember my mother saying to me "Amy! Wake up...! Don't go to sleep please!" I was so tired. I just wanted to sleep. But I wasn't sleeping. I wasn't breathing. After three days of struggling to hang onto life the doctors said I was strong enough to be transferred into a regular maternity room. I was FINALLY able to see/hold my brand new baby girl. Having her was by far the scariest thing I have ever been through but I wouldn't trade it for the world because it brought her into my world. God was truly watching over the both of us. I was able to bring my baby home when she was 6 days old. What a miracle!!! It wasn't until I was being discharged that they explained my diagnosis to me and my family.

So, people tell me to feel lucky because I was lucky to have survived such an experience and maybe to most I sound ungrateful because recently I think it's unfair. I think it's unfair that doctors and my family are telling me "No" and that I should reconsider the idea of having another child. I didn't get to experience the baby shower. I didn't get to experience being the first person to hold my baby. I didn't get to experience that first glimpse and welcome her into this world. I feel robbed. I feel blue and I just want to cry.
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Re: 4 years later and I'm feeling blue....

Postby Iheartjulio » Wed Apr 11, 2012 06:49 pm

by Iheartjulio (20 Posts), Wed Apr 11, 2012 06:49 pm

I am so sorry that your pregnancy and delivery were so traumatic. Something like that can def scar you for life. And I know where you are coming from with struggling about not feeling lucky. Its like when someone survives a car crash but is in a coma and has to relearn to walk. Obviously they were lucky for surviving but it would have been more lucky to never be in the car crash. You have every right to feel cheated and ripped off, I sometimes feel the same and I did not come near as close to death as you. I don't know if this is the right thing to say but I am just wondering if you have seen a MFM for their opinion on you trying again? Some Drs tend to be more supportive than others. I don't know if it is even a possibility for you to try but I would def want to rule out every possibility if it was me. As far as your mom goes you can love her and respect your opinion but it really comes down to you, your husband and your doctors. I have heard of woman with very severe cases who were able to go on and have healthy pregnancies. Either way have you considered counseling? Sometimes it can really talk to someone who is not close to you or the situation and will just listen to how you feel instead of telling you how you SHOULD feel. Once again I am sorry you are having such a hard time, saying a prayer for you!
[color=#FF0000]Mom to Isabella born 4/20/2011 delivered via c section due to sever Pre-E at 29 weeks 5 days.
Starting TTC again[/color]
MC 09/09/2011
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Re: 4 years later and I'm feeling blue....

Postby tree » Wed Apr 11, 2012 09:58 pm

by tree (819 Posts), Wed Apr 11, 2012 09:58 pm

Wow. That is a scary delivery story. I am so glad to hear that you are both okay now.

I don't have much to add to the great post above. Counseling was tremendously helpful for me. I haven't gone to see an MFM yet to ask about another pregnancy, but that will probably be the next step. It seems like something we need to do in order to make peace with one child or decide to try again. Many posters have had great consults with MFMs that have help them make the right decisions for their families. It does sometimes require visits to a few different MFMs to find the right one.

I also talk through pretty much everything with my Mom. She is very medically savvy and calm, and this scared the heck out of her. My daughter has had some relatively scary illnesses, and I can't imagine watching her endure HELLP. It took me a while to accept that the whole thing was pretty traumatic for all of us. I try to remember that whenever they say anything weird.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: 4 years later and I'm feeling blue....

Postby caryn » Thu Apr 12, 2012 00:10 am

by caryn (10110 Posts), Thu Apr 12, 2012 00:10 am

It is unfair that other people are trying to make your pregnancy decisions for you. You have the responsibility to make your own decisions, informed by the input from those you love and those who will care for you. It's your job to consent to pregnancy in an informed fashion and medical ethicists chucked paternalism out the window a while back - it is the job of your care providers to explain their concerns and accurately report risks, and it is your place to assess that information in light of your own values.

You may never get the outcome you would prefer - your risk for preeclampsia in a subsequent pregnancy would be around 40% simply based on your gestational age at onset and any pregnancy will be at high-risk of complications - and that's not something that's really down to fairness, simply because pregnancies are unpredictable and good outcomes aren't distributed because we deserve or want them. We didn't deserve these pregnancies, but no one does.

I would definitely seek a second opinion from a maternal-fetal medicine specialist who's used to counselling women thinking about a subsequent pregnancy. OBs and family are less (or far less) experienced with the incidence and treatment of these conditions than MFMs, and seem less confident about their ability to provide care.

Do you have any unmasked underlying conditions that would make pregnancy more risky, or is a history of HELLP your only risk factor?
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies? Lectures from researchers?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy
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Re: 4 years later and I'm feeling blue....

Postby caryn » Thu Apr 12, 2012 00:29 am

by caryn (10110 Posts), Thu Apr 12, 2012 00:29 am

I just went and hunted down a reply I remembered giving to a woman in similar shoes. It says the same thing in a different - and clearer - way, so I'm reposting it here:

I always cringe when I read things like this.

Your OB probably *means* that your risk of having PE again is high, and wants to hammer home that there are no guarantees, and that you and your baby would be at substantial risk.

But an OB cannot tell you what you *should* do. An OB is an expert, and an authority, on what it is that is likely to happen to you in another pregnancy, and if you are a rational person (I assume you are! I'm just saying some people are nuts and wouldn't care about the OB's background here) you'll take that into account when you assess your values and your interests.

Whether or not you *should* have another baby is your call. Always. That's for the same reason a Jehovah's Witness can decline blood transfusions even if it means death to do so -- you give informed consent.

I'd talk to a MFM if you are wanting to think about more children, and see what the MFM says about odds and risk and management. Sometimes we traumatize OBs but the MFMs, who see this syndrome way, way more often, are not so scared of subsequent pregnancies.
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies? Lectures from researchers?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy
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Re: 4 years later and I'm feeling blue....

Postby amyjo_000 » Fri Apr 20, 2012 10:38 am

by amyjo_000 (3 Posts), Fri Apr 20, 2012 10:38 am

Thank you ladies for the advice. It's very helpful. I had never heard of an MFM so will look into that.

I understand my mother's concern inregards to my thoughts on having another baby. My delievery was scary for everyone in my family so they worry when I speak about having another one. It's a painful topic for me to have with them because they have never experienced HELLP and they have all been able to have children without any kind of pregnancy complications. It was a relief when I found this forum so I could share my stories with other women who have had HELLP and get suggestions from them.

No, I have no other risk factors that would stop me from having another baby. The only thing is the HELLP. I've had all the genetic testing done and nothing showed up....it shows me to be as healthy as they come.
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Re: 4 years later and I'm feeling blue....

Postby tls562 » Thu Apr 26, 2012 10:20 am

by tls562 (9 Posts), Thu Apr 26, 2012 10:20 am

I know how you feel. I just had my second child and developed HELLP with both. I was put under general anesethia for both deliveries, both went to the NICU and I didnt get to see either of them for a few days after their birth. Nothing went as planned. I am also sad my husband didnt get to experience their births since he wasnt allowed in the OR. I focus on the fact that both kids are healthy, I'm blessed. Its disappointing though. Just wanted to share that I understand.
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