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

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Postby wildmama » Sat Jul 17, 2010 01:38 pm

by wildmama (4 Posts), Sat Jul 17, 2010 01:38 pm

A little about me -- I was diagnosed with HELLP syndrome at 38 weeks. I did not have any symptoms prior to my diagnosis. I had gone in for an ultrasound the day before my diagnosis because my fundal height measurements were erratic. My OB had told me it was probably because the baby was changing position. I was basically just expecting to get more pictures of the baby. Little did I know! At the ultrasound, they discovered DS was only measuring in the 3rd percentile. The doctors did a non-stress test and he passed, so they put me on bedrest and told me they would induce me the next week and they ran some bloodwork. The next morning my doctor told me that my bloodwork came back, the results were not good and I needed to get to the hospital right away for an emergency c-section. Four hours later, my son was born at 5 lbs. 8 oz. It was while we were in the hospital that I was told I had HELLP syndrome and IUGR. It wasn't until after the c-section that I really started to feel sick (I swelled up a lot), but I haven't had any notable health issues since then.

A little about my son -- He has had some issues with his heart and lungs and has had problems gaining weight. He had to be put on oxygen for 3 months because we lived at high altitude. We moved to a lower altitude and he was able to come off of oxygen and his heart checked out fine. The doctors told us he had pulmonary hypertension when he was born, but no longer has it. He has never been able to breastfeed, which has been pretty devastating for me since I was very committed to breastfeeding, and he remains very small (10th percentile for weight). But he is reaching all his developmental milestones and is a happy little boy. He is definitely the joy of my life.

I have so many questions related to HELLP ... Am I at long-term risk for other diseases or health issues because I had HELLP? Is my son at risk?

Also, I would really like to have another child. I am an only child, and I never wanted to have just one child -- I wanted two. My husband is scared about me risking my life or our child's, but I believe with proper monitoring, it is unlikely that anything would happen to me. What scares me most is having a preemie, miscarriage or stillborn. I have read the risks of HELLP happening again are anywhere from 5-25%, and if it were to occur, it would more likely be later in my pregnancy. That makes me believe the odds are in our favor, but 1 in 4 is still pretty high. Also, I have read that I am more at risk for developing preeclampsia, but what about other pregnancy complications like miscarriages and preemies? Are there any kind of screening tests I should have done before I get pregnant again?
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Re : new here

Postby amandaoasis » Sat Jul 17, 2010 02:15 pm

by amandaoasis (541 Posts), Sat Jul 17, 2010 02:15 pm

Hello and welcome to the boards!

It sounds like you had a pretty scary ride with your HELLP experience. I also had HELLP and understand how nerve-racking the decision can be to try again. I am pregnant right now. What really helped me get to this point is a good maternal-fetal specialist and a lot of soul-searching.

There are tests you can have run for blood-clotting disorders which may be associated with PE and HELLP. Here is a link to possible tests your doctor may want to run:

http://www.preeclampsia.org/forum/viewtopic.php?t=3513&SearchTerms=mthfr


The good news is that you developed HELLP late in your pregnancy. It is more likely for you that it will be late again and that with close monitoring your outcomes will be good. I was given a 25-60% recurrence rate since I was at 31 weeks, but my MFM felt I was closer to 25% since no disorders were found. I'm 24 weeks plus right now and so far so good!

I also wanted so badly to breastfeed, which did not work out (I was at the pump for 8 months instead). I know how devastating that can be.

I see you are also in CO. If you want a recommendation for MFM, or anything else, feel free to email me at amandaoasis@hotmail.com.

Good luck!
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Re : new here

Postby tree » Sat Jul 17, 2010 11:16 pm

by tree (819 Posts), Sat Jul 17, 2010 11:16 pm

Welcome, and sorry you had to find us here.
How old is your son? I am glad to hear he is doing well now. My little peanut is not such a little peanut anymore. She was born at 35 weeks because I also had HELLP, spent about 3 months on O2 due to altitude, and has done really well since then. We also struggled with breastfeeding. The lactation consultant at the hospital said it is pretty common with HELLP, and there are many women on the board who have had problems along with a bunch that were able to breastfeed. HELLP is different in each person.
My daughter is 15 months old, and I am just starting to think about having another baby. I am not nearly ready yet, but I feel like I could be next year. I need to find a good MFM to talk to about that. My doctor didn't instill a lot of confidence in me about another pregnancy. I learned here that another doctor would probably be able to do that.
As for long term consequences, most doctors will tell you that there aren't any. There is a lot of recent research that suggests that there are some increased risks for cardiac problems later in life and thyroid problems. I finally feel "normal" again this summer. It took me about a year. Most people feel better much sooner.
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Re : new here

Postby wildmama » Sat Jul 17, 2010 11:47 pm

by wildmama (4 Posts), Sat Jul 17, 2010 11:47 pm

quote:
Originally posted by tree

Welcome, and sorry you had to find us here.
How old is your son? I am glad to hear he is doing well now. My little peanut is not such a little peanut anymore. She was born at 35 weeks because I also had HELLP, spent about 3 months on O2 due to altitude, and has done really well since then. We also struggled with breastfeeding. The lactation consultant at the hospital said it is pretty common with HELLP, and there are many women on the board who have had problems along with a bunch that were able to breastfeed. HELLP is different in each person.
My daughter is 15 months old, and I am just starting to think about having another baby. I am not nearly ready yet, but I feel like I could be next year. I need to find a good MFM to talk to about that. My doctor didn't instill a lot of confidence in me about another pregnancy. I learned here that another doctor would probably be able to do that.
As for long term consequences, most doctors will tell you that there aren't any. There is a lot of recent research that suggests that there are some increased risks for cardiac problems later in life and thyroid problems. I finally feel "normal" again this summer. It took me about a year. Most people feel better much sooner.



My son is 7.5 months old now. I am glad I am not the only one whose baby had to be on O2. I think it is pretty common in Colorado. One of the lactation consultants I saw said it was extremely rare for a baby on O2 to be able to breastfeed.

I hope you are able to find a good MFM. I think that is the next step for me, even though I know it will be a little while before I will be ready to have another child.
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Re : new here

Postby tree » Sun Jul 18, 2010 12:21 am

by tree (819 Posts), Sun Jul 18, 2010 12:21 am

We live at about 8500'. The neighborhood Moms told me that the babies (even at term) sometimes come home on O2 up here. I was a little surprised that both O2 companies knew our neighborhood before I heard that. We ended up on O2 again when she got RSV in March. That was much more difficult and also very common. There are some downsides to having babies at altitude, but nearly all of the neighborhood kids are very healthy anyway.
Cannulas make breastfeeding difficult, but our problem was me. Fortunately, she my daughter wasn't terribly picky and we were able to breastfeed a little for a few months. It made me feel better about the whole thing.
Let me know if you hear of a good MFM. Nearly all of the MFMs I have found on the internet are down in Denver or further east, and I am just burned out on doctors to make the trek out to see one of them.
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Re : new here

Postby milesymommy » Tue Jul 20, 2010 11:45 am

by milesymommy (336 Posts), Tue Jul 20, 2010 11:45 am

I ended up with HELLP with DS1. Kind of like you... I had no outward symptoms, just high BP as my pregnancy progressed. At 36 weeks, the midwife sent me to L&D because it was so high, and they ran labs, I was immediately induced for PE/HELLP. Luckily, we did not experience IUGR, Miles was 7lbs 6oz. He had feeding issues, I did BF but had to supplement. He was always on the low end of the percentiles for weight. He's 3 1/2 now, at the 36%. There's nothing wrong with being on the low end. Beleive me, I asked and asked and asked the peds about it. Always hard when your child doesn't seem to gain weight like other kids.
I knew I wanted more kids, learned more about PE and HELLP that scared me more. But I wanted another child, and I knew that holding the baby and seeing him smile and listening to him coo and all the future smiles and giggles and hugs were worth the months of worry and the possibility of loss. DS2 is 10 months old now. Only PIH, no PE, no HELLP. I was worried, so worried the entire time. It was so hard to enjoy the pregnancy. I came here to vent and share and have people that understood what I was going through.
Good luck with your decision!
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Re : new here

Postby wildmama » Fri Jul 23, 2010 12:56 am

by wildmama (4 Posts), Fri Jul 23, 2010 12:56 am

quote:
Originally posted by tree

We live at about 8500'. The neighborhood Moms told me that the babies (even at term) sometimes come home on O2 up here. I was a little surprised that both O2 companies knew our neighborhood before I heard that. We ended up on O2 again when she got RSV in March. That was much more difficult and also very common. There are some downsides to having babies at altitude, but nearly all of the neighborhood kids are very healthy anyway.
Cannulas make breastfeeding difficult, but our problem was me. Fortunately, she my daughter wasn't terribly picky and we were able to breastfeed a little for a few months. It made me feel better about the whole thing.
Let me know if you hear of a good MFM. Nearly all of the MFMs I have found on the internet are down in Denver or further east, and I am just burned out on doctors to make the trek out to see one of them.



We used to live at 8,500 feet, too. We ended up moving down to 7,000 feet, so that he could come off oxygen.

The only MFM I have found is in Denver, too.
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Re : new here

Postby wildmama » Fri Jul 23, 2010 12:58 am

by wildmama (4 Posts), Fri Jul 23, 2010 12:58 am

quote:
Originally posted by MilesyMommy

I ended up with HELLP with DS1. Kind of like you... I had no outward symptoms, just high BP as my pregnancy progressed. At 36 weeks, the midwife sent me to L&D because it was so high, and they ran labs, I was immediately induced for PE/HELLP. Luckily, we did not experience IUGR, Miles was 7lbs 6oz. He had feeding issues, I did BF but had to supplement. He was always on the low end of the percentiles for weight. He's 3 1/2 now, at the 36%. There's nothing wrong with being on the low end. Beleive me, I asked and asked and asked the peds about it. Always hard when your child doesn't seem to gain weight like other kids.
I knew I wanted more kids, learned more about PE and HELLP that scared me more. But I wanted another child, and I knew that holding the baby and seeing him smile and listening to him coo and all the future smiles and giggles and hugs were worth the months of worry and the possibility of loss. DS2 is 10 months old now. Only PIH, no PE, no HELLP. I was worried, so worried the entire time. It was so hard to enjoy the pregnancy. I came here to vent and share and have people that understood what I was going through.
Good luck with your decision!



thanks for sharing your story. It is so good to hear success stories! DS has been hanging around the 10th percentile for months now, but I am OK with that. We were just glad to actually make it on the growth chart!
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