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My story

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

My story

Postby preemomof2 » Thu Oct 22, 2009 06:24 pm

I was 26 years old when I first got pregnant. My pregnancy went fine except for 3 mos of continuous UTI's. At 35 weeks into my pregnancy i started feeling an acute pain right about where your breastbone ends. The first night doctor on duty (My doctor was out of town) said to take tums because it was probably gastritis. The next morning I went to his office just to make sure everything was fine with my baby girl(again gastritis diagnosis). That night i was in pain again for about 2 hours till I decided to go to the hospital, at that time my doctor was on duty. I told the nurse i had a slice of pizza that night and she told the doctor. Doctor didn't see me, she just ordered mylantha and released me from the hospital.

The following morning I had a routine check up and they did a CBC which showed my liver enzymes elevated, protein in urine, and platelet count at 48.000. At 5:00 p.m. they call my house to go back to the OB's office to have more blood drawn, at 8:00pm I'm told to go to the hospital to have a liver sonogram done. So it turns out that by midnight everything just got worse and platelet count is at 22.000 and I was bleeding. I was rushed to an emergency c-section(I had developed HELLP and pre eclampsia) and my mom was told to pray for me cause I was in God's hands. My husband was in Tennesse for his Job training and we hadn't seen each other in 2 mos. At 2:23 a.m. my daughter was born weighing 4lbs4oz. I spent 2 days in the ICU and she spent 8 days in the NICU cause her platelets were low. The doctor saw me during my stay at the ICU and when she went to sign the papers to release me from the hospital. Since then (Already almost 8 months) she has not seen me or given me an explanation, i've been only seen by the nurse practitoner.
I wish she accepted that she did something wrong, because I've lost the confidence I had in her, and sometimes doctors do not understand how debastating this is to us. I did not see my baby's birth, [b]I couldn't see her for 2 days, and I'm left with all the if's.
On the bright side, my little angel is growing and she's the most adorable thing that ever happened to us, her name.....Daniela, our little miracle.
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Re : My story

Postby jfindley » Thu Oct 22, 2009 10:40 pm

Welcome Gabriela. Congratulations on your baby girl! I was also misdiagnosed with Gastritis for awhile, in fact, the OB argued with the perinatologist, who suspected HELLP. My OB tried to discharge me, but the peri overrode the discharge and thank God, kept me in the hospital until I delivered at 26 weeks. They should have taken you straight to the hospital the morning theu saw you platlets at 48,000! That was so risky for you and Daniela. Even on the day of my delivery, they tried to give me mylanta again, it was so frustrating. I do give my OB some credit as she was the one who finally ordered the liver MRI to reveal my liver bleeding and my gall bladder was fine. After delivery, I also never saw my OB again, not by my choice, she just never returned my calls. I think HELLP is commonly misdiagnosed and most OB docs just don't have that much experience with it. I started interviewing all the OB docs in my HMO and finally found a great one who has taken the time to go over my chart and has a lot of experience with HELLP. I hope you can do the same. You may also want to ask for a consult with a maternal fetal medicine doc or perinatologist to look into underlying conditions. The one thing I have come to learn through all of this is that most of the time, various doctors will have various opinions on diagnosis and treatment and just be in complete disagreement. It can leave you feeling confused and vulnerable. The only way I cope is to educate myself as much as possible so I can understand the decisions being made. I ask a lot of questions and if one of my many docs doesn't communicate well with me, I just immediately request a 2nd opinion until I find one who will listen and explain. I drive them all crazy, but I keep telling myself, if I get pregnant again, I don't want any surprises that could have been prevented. My boy is almost 1 year old (8.5months adjusted)now! He just started crawling! He weighs 21lbs and is doing great. He just got the dreaded RSV and we are doing breathing treatments at home, but I think he is going to be fine. They really are little miracles!
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Re : My story

Postby preemomof2 » Thu Oct 22, 2009 11:44 pm

Thank you, I also want to be as informed as I can because if we have the opportunity to have another little one i want to be in control. It's so difficult to go on with fear that if I become pregnant something might happen to my baby or to me and that i will not be able to be with my daughter. i'm glad to hear your baby boy is growing. Are you thinking about having another baby?
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Re : My story

Postby jfindley » Fri Oct 23, 2009 01:17 am

We are thinking about having another baby, but I am so scared. On delivery day, on the MRI they also found a rare adrenal gland tumor that causes deadly high blood pressure. All the docs say it was almost certainly the cause of my HELLP and I had surgery to remove it. I felt good about this conclusion for awhile, but the more I learned about some of the more common underlying conditions of HELLP, the more I wanted to be tested for them all. I finally asked to be seen by a hematologist and low and behold, we found another underlying condition, a possible autoimmune disorder. The deeper I dig, the more we discover. We also found a thyroid tumor that will be removed in a couple of weeks. I will have had three surgeries in one year and my MFM has suggested that I take some healing time before we try again for another baby. I totally agree. The whole year has been pretty traumatic. I do feel a lot more confident now that my docs are all aware of my history and underlying things. If we did conceive again, I would feel a lot safer this time. Do you think you will try again?
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Re : My story

Postby preemomof2 » Fri Oct 23, 2009 11:22 am

Don't know, we initially wanted to have 3 children,but at this point we'll just give it sometime.
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Re : My story

Postby cjd » Fri Jun 25, 2010 02:42 pm

Your posts give me chills. That the OBs wouldn't talk to you about the situation stuns me. My OB's nurse admitted that they "got the book out" the next morning to see if they could have done something differently or should have known about how I was doing prior to the full-blown HELLP. My doc had been following me closely and doing regularly testing. Two events shouldn't have occurred, however: 1) I went to L&D with false labor four days before I delivered and the nurse released me with elevated BP. We didn't know at the time that elevated BP could indicate anything out of the ordinary (I was having contractions and felt justified in having a raised BP...umm, can you say first-timer??). And 2) 1) When I called L&D at 2 a.m. to tell them I was having horrific epigastric pain, they should have told me to come in (instead of instructing me to take a Tums and go back to bed).

So my doc actually never knew about these events. I never had chest pain in the day time again until the day I delivered. I called to tell my doc I wasn't doing so well...and I was right.
It just happened *that* fast.
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Re : My story

Postby jenmatt1 » Fri Jun 25, 2010 06:25 pm

Reading these stories I feel so lucky that the moment I called my doctor's office she had me come in right away and within 30 minutes from getting to her office I was being admitted to the hospital. I never had any right side pain- I just didn't feel good, like a cold or something. So by the time I got the hospital I had class I hellp too. I know how differently my situation could have turned out if she had ignored what I was telling her. Even though me & my daughter had a rough birth, it could have been much worse if she didn't listen to me.

I struggled with the idea of more children, especially after I had 2 miscarriages in a row. But I am now 11 1/2 weeks pregnant now. The thing that changed is that I monitor everything now. I am not afraid to ask questions or call them even when I am just nervous and I have talked with my doctor about a plan for this pregnancy and how often I would be monitored, etc. Believe me, I still fear it happening again but I feel much more in control of a plan of what to do.
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Re : My story

Postby jenmatt1 » Fri Jun 25, 2010 06:27 pm

Oh- and by the way- it seems to be a common thread amongst a lot of women to have had a UTI during pregnancy. The one & only time in my 34 years that I have had a UTI was supposedly while I was pregnant. Looking back, I think this was early sign of protein, not really a UTI. I know there are some other women on the forum who have had this as well/
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Re : My story

Postby danielsmom » Mon Jul 05, 2010 11:30 pm

First of all, praise God your little one is fine! You had me nervous reading through that. :-) Daniela is a beautiful name, my little miracle's name is Daniel and I had thought of Daniela if he was going to be a girl.

Doctors sometimes have inflated egos. In a book, "The Silent Cries of the HELLP Syndrome Baby", the author wrote a similar story about her OB evading the HELLP diagnosis from the hospital's MFM. In her post-partum visit with the OB, she asked about the diagnosis and he said something like "they should leave obstetrics to obstetricians". Then on her discharge paperwork from that appointment, he wrote HELLP Syndrome as his official diagnosis. That always stuck with me.

My OB and other nurses also gave me the gastritis/heartburn opinion too. I've never had heartburn so I thought MAN! Heartburn is killer!
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Re : My story

Postby jenprzygoda » Tue Jul 06, 2010 10:34 am

Gabriela,
I am so sorry to hear you had such and awful experience. While I was lucky that my doctors and midwives didn't ignore my symptoms, they weren't sure what to make of them either. I had very bad swelling for the month before my son was born and they were running tests all the time, it is just that HELLP came on all of a sudden. What struck me about your post was the comment about not seeing your baby's birth. That is still one of the biggest "regrets" that I have. I put regrets in quotes because I know it was not my choice and that I had to have general anesthesia due to my complications, but I am so jealous of all those moms and dads out there who are able to witness the birth of their child. When others talk about what it was like when they first saw their baby, all I can do is think of how it took so long before I was well enough to see him - I am guessing it is a similar feeling you have. So for me, this is what has helped - 1) I read my hospital report and my surgery report as it was a very straight forward account of what happened and 2) when people talk about the joys of birth or seeing their child for the first time, I say wow, you are lucky! I wasn't there for my son's birth! It really makes people think and helps me move the conversation in a different direction. I know this doesn't help with losing your confidence in your doctors, but I just wanted to let you know that you are not alone in how you feel. Take care of yourself!
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