Sister In Hospital

[MomtoGiuliana]

Hi All

Just thought I'd update the group...

My sister (erikapt on here--tho hasn't used DINET much) has been in hospital since Wed. She started having high bp a couple weeks ago. Her bp is running 160/100 and b/c she also has gestational diabetes, along with POTS, and they have administered steroids in case she has to deliver pre-maturely, they are keeping close tabs on her and she will be on strict bedrest when she is released. No protein in her urine or other preeclampsia symptoms besides some moderate swelling.

She says she feels absoultely fine and is bored out of her mind (although worried). It's so weird--I felt horrible from 32 weeks on, but was supposedly "fine"/had no diagnosable medical problems.

I'll let everyone know how things go in the coming weeks--she is due March 10.

Katherine

[MomtoGiuliana]

My sister lost her baby last night.

I don't know all the details yet. She had placental abruption. She is in ICU. I also had this, fortunately, Giuliana survived. I feel this issue MUST be studied (data on POTS patients and delivery) and reported on in a medical journal. This is my new mission. Like me, she should never have been allowed to go into labor. I am so sick and numb over this.

[Rachel]

Oh no. That is so tragic and devastating. I am so, so very sorry for your sister's loss.

Your sister and your family will be in my thoughts and prayers.

Love,

Rachel

[MomtoGiuliana]

Thank you Rachel. I am grief-stricken for her and feeling increasingly angry. I don't know the details yet, but I want to know if the doctors were aware she had POTS and knew what it is. I realize most POTS patients have uneventful labor and delivery (and I do not want this to scare anyone). I however also have POTS and had this happen during labor, and now the same thing happened to her, with an unspeakably tragic outcome. I know I also feel guilty--like I should have been there. Maybe I could have stopped it from happening b/c of my knowledge of the condition and my experience.

Another sister just e-mailed me to say she has received 2 units of blood and still in ICU.

[jjb]

I am so sorry to hear your sister lost the baby.

I had a partial abruption at 28 weeks w/ Ava. We did an induction at 35.5 , I questioned weather or not it would be safe since I had the abruption. Ava did not tolerate the induction well at all and her HR dropped many times. FINALLY after 2.5 days they did a c/s ... unfortunately Ava had a stroke.

Again I am so sorry.

[MomtoGiuliana]

jjb, I am so sorry you also experienced this and that your daughter had a stroke.

I feel we must compile this information on outcomes and suggest it be published. I understand it is anecdotal info. But that is about all we have to go on with POTS right now. I really question whether POTS patients should be induced, especially if they have high bp.

[jjb]

jjb, I am so sorry you also experienced this and that your daughter had a stroke.

I feel we must compile this information on outcomes and suggest it be published. I understand it is anecdotal info. But that is about all we have to go on with POTS right now. I really question whether POTS patients should be induced, especially if they have high bp.

Have you been over to the Preeclampsia foundation forums?

There are others that have had abruptions.

I forgot to mention in my earlier post, I was very tachy as well as had very high bp. My POTS symptoms were greatly increased during preg. My BP would run as high as 130/190 ... my HR often was into the 140s to 150s.

After the c/s my BP dropped down to 50ish/30ish.

[dsdmom]

I am at a loss as to what to say - that is truly horrendous. I am so very sorry for your sister's loss. That saddens me beyond what I can express in words.

I myself almost died after delivery due to placenta accreta. It was very scary and extremely tough but I can not even pretend to relate to your sister because I was lucky that my daughter survived.

Please let her know that she has all of our thoughts with her.

[firewatcher]

I am so sorry! Please know that her family is in my prayers.

Jennifer

[momofsara]

I'm so sorry to hear of this tragedy..... Love and hugs --Susan

[delphicdragon]

I'm so sorry for your sister's loss. I echo what everyone else says - this shouldn't have been allowed to happen. She should not have gone into labor. My thoughts and prayers are with you all.

Sara

[flop]

Katherine, I am so sorry to hear your dreadful news. I am thinking about you, your sister and your families as you try to come to terms with your loss. Pregnancy is supposed to be a happy event so makes bearing this sort of situation even harder than other family deaths. I hope that your sister recovers medically from her situation quickly and is able to be with her family for support as she starts to grieve.

Your mention of a possible link between POTS and placental abruption is interesting. Placental abruption occurs in 1 in 100 pregnancies which will be a much higher occurance than the number of POTS pregnancies so you may both be an unlucky combination rather than at increased risk? Another factor that is associated with high risk of abruption is having a high BP such as your sister had. I also wonder if there is any familial link (or undiagnosed condition such as Ehlers-Danlos Syndrome) or if abruption is just a sporadic occurance?

I wouldn't want to scare anyone who is pregnant or planning pregnancy so I will mention that I have two friends with POTS who have both had babies without any abruption. One had an elective C-section and the other a spontaneous vaginal delivery.

POTS certainly complicates all medical situations for us and I think that increased monitoring and early action are warranted but sometimes even with in-hospital monitoring things can go disasterously wrong.

Again my thoughts are with you all,

Flop

[MomtoGiuliana]

Thanks everyone, and thanks flop for your detailed reply. You are correct that there may not be a connection--I am floundering and trying to make sense of something still so unbelievable and a living nightmare. How can someone be 34 weeks along, under intense monitoring, and lose the baby. It seems wrong that this could happen in 2009 in an American hospital.

I did find out that she had been released from the hospital to bedrest at home. She went into labor 2 hours later with bleeding. By the time she got back to the hospital the baby was no longer living. She is still in ICU. They had trouble stopping the bleeding--her blood was not clotting as it should.

I also wonder about EDS for us and wonder if it should be evaluated, however, my POTS specialist does not feel I have any of the signs of EDS so I have never pursued it.

I absolutely agree that abruption is not the normal course of events for POTS patients. It is more of a concern for patients with preeclampsia/high bp. But I still wonder -- if a patient has high bp and POTS if that should be treated with more care than a patient with no other complications besides the high bp.

[Ernie]

Hi,

I am sorry for your loss. I will keep you in my prayers.

[MomtoGiuliana]

Thanks Ernie.

My sister is still in ICU. She's now had 4 units of blood, and platelets, and is supposed to get a 5th unit. The surgeon said a prayer with her before he did the emergency c-section. I thank god/the universe, and the hospital, that she survived.

[doctorguest]

Katherine,

I am very sorry for the tragedy that your family is experiencing. Please accept my condolences.

As to whether POTS played a role in this tragic outcome, I completely agree with Flop on her statements. It appears, at least anecdotally, that there is no - or should not be - a connection between POTS and pre-eclampsia/eclampsia. However, as you pointed out, this subject has not been studied, and this is exactly why I am now working on getting funding for a research project that addresses POTS and pregnancy.

I hope your sister has a speedy physical recovery; the grieving will, undoubtedly, take a much longer time.

[MightyMouse]

What a horrible thing for your family. I hope that your sister improves steadily and will keep her and your family in my thoughts. Hugs, Nina

[mkoven]

I'm so sorry to hear your terrible news. I'm thinking of you.

Michele

[MomtoGiuliana]

Thank you all. I think my question is--if a person has both POTS and high bp that develops during pregnancy, if further precaution should be taken, than would be for someone who simply has high bp. Further precaution being, preventing labor and using c-section for birth. Since both my sister and I have POTS and both developed high bp and both ultimately experienced abruption (which apparently in both cases was a surprise event to our doctors) I just wonder if it would make sense to review data, if it exists, on POTS and hypertension in pregnancy, and outcomes.

doctorquest--I am very glad to hear that you are still seeking funding to study POTS and pregnancy. I hope someday there will be better guidance that can save lives and health when pregnancy and labor goes wrong.

[flop]

Katherine, you are asking a good question but as far as I know there simply isn't any data to say what should be done for POTS pregnancies.

As I said before I have 2 POTS friends who deilvered in different ways. One was told that no-way could she even consider a vaginal delivery that a C-section was the only option. The other friend had a normal vaginal delivery. Both had healthy babies.

When one of the friends was pregnant we spent a lot of time looking up any published information about POTS and pregnancy and there was very very little, in fact I think her OBGYN was planning on writing up her case.

Until there is some information to say C-section better or vaginal birth better, there is really nothing to guide doctors when treating pregnant women with POTS. Even for healthy women the debate C-section vs vaginal delivery doesn't have a clear answer. Add to that the POTS is probably a group of several different conditions (not just one identical illness) it is likely that the "best treatment" will be different for each individual case.

I know that you will have lots of questions, especially the "what if...." type and not having answers must be maddening. I know how much of a high-risk speciality OBGYN is, especially in the USA. I also know from experience with family that OBGYNs will be looking for any signs that suggest the pregnancy is in danger. High BP is a common occurence in late pregnancy but without proteinuria is usually monitored and treated with bedrest. Placental abruptions usually are "suprise events" if they could be predicted something would be done to prevent them. I believe that whilst high BP increases the risk, most Moms with high BP do not have an abruption. Signs that would suggest an abruption are severe abdominal pain, vaginal bleeding and signs of hypovolaemic shock - I'm sure that even a junior resident would not send home an expectant Mom with any of those symptoms.

Life can be cruel and horrible things can happen for no reason and with no warning - that is why berevement of this sort is so tragic and upsetting, no-one thought it would happen.

I echo DoctorGuest's call for funding to learn more about pregnancy and POTS - without information our doctors can't learn how best to help us. I wonder how much information could be gathered from all the women on DINET who have been pregnant after being diagnosed with POTS?

thinking of you and your family Katherine,

Flop

[MomtoGiuliana]

Thank you flop. Your thoughtful responses have really helped me as I navigate grief and coming to terms with this.

I also wonder about collecting data via DINET. Such access to a patient pool was not as available in the past. It seems like a way to at least look at anecdotal information--that might perhaps help researchers know which questions might be most worth asking.

[Maxine]

I'm so sorry to hear this tragic news Katherine. Your sister is in my thoughts and prayers, and I'm praying for her full recovery. Of course the loss of her baby will always be with her, but I pray that some day she can find peace.

The information on POTS/pre-eclampsia/eclampsia connection is worth investigating.

I DO wonder if EDS could be a factor, as I could see this more with EDS, and wonder if the EDS is primary, and the POTs secondary? I see a POTS specialist, and he didn't think I had EDS either---(basically I didn't look the part), but I continued to investigate further due to dislocating shoulders and spine instability ect. Three different geneticists confirmed the diagnosis.

During my pregnancy with my son I had heavy bleeding for about three weeks, there was no explanation, and I was told to keep my feet up. The labor was very hard, but not long. They took me to delivery because I was in distress, but they never did tell me what was wrong with me--this was back in 1981. I'm fortunate that the baby was OK. I didn't have any other complication after delivery other then a broken tail bone from forcepts.

My niece lost her baby two days before due date, but she was OK. There was no explanation to her loss, but she kept telling the doctor the baby didn't seem to move very much, and the doctor told her she was being too anxious.

She is showing POTs symptoms, but right now they seem to be milder---or it may not even be POTS. They have been through a lot, and it could be from all the stress. My niece was also hospitalized once for her high blood pressure during her pregnancy.

HUGS & prayers to you, your sister, and the whole family during this very difficult time.

Maxine

[MomtoGiuliana]

Thanks Maxine. Neither my sister or I have ever had problems with joints or dislocations. Although we both experienced TMJ after wearing braces on our teeth--which never became chronic or serious. It cleared up for both of us within years. However, I do wonder. I don't know the best way to go about getting tested.

I remember your letting us know about your niece's loss. It's horrible that anyone has to go through this. I hope she is managing the grief ok.

[flop]

Hi Katherine,

if you are looking for more information on EDS then it would be worth looking at www.ehlers-danlos.org and www.ednf.org for more information. If you wanted to find a doctor near you experienced in Ehlers-Danlos Syndrome then those sites may have lists of doctors or recommendations on the forums. To read the EDNF website you need to register (free) but to read the fora you need to join. The other site is free to use, it is based in the UK but has memebers all over the world including a lot in the US.

Flop

[MomtoGiuliana]

Thank you. It's scary to me. I felt this possibility had been dismissed--but I need to look at it regardless of my specialist's opinion, I think.