Pregnancy - Want To, But Scared. Advice From Pots Preggers (Past Or Present)

[katT]

Hi everyone,

So we would like to have kids but I am, quite frankly, terrified. Pregnancy as a "regular" person has always seemed a little scary to me...but pregnancy as a potsy is intimidating to say the least. I am worried about a ton of things...such as my heart rate going or staying tachy way to long, increased pain, increased dizziness, increased migraines, BP issues, and other symptoms. I have no idea what to expect and am hoping that all of those who had POTS while pregnant can weigh in...whether that is good or bad. I just want to know what to potentially expect.

Also, did you wind up having a natural birth or C-section? Why?

Thanks!!

Kat

[micheller]

My pots symptoms started with my 3rd pregnancy. I've read people say their symptoms improved with pregnancy because of increase blood volume. Mine, however, was horrible. Not to scare you, everyone is different. I was couch bound for almost the whole 9 months. My symptoms were awful for about a year and half after delivery until they started to decrease. I had a c-section with my last 2 but it was because a different issue not related to pots. I was induced with my 1st.

[GypsySoulNicole]

I carried 3 daughters while living with undiagnosed POTS. With my 1st pregnancy I threw up every meal every day for 9 months. I delivered her vaginally, full term at 7lb 8oz. The next 2 pregnancies wreaked havoc on my body. The little girls are 12 months apart. The were both born premature, taken to the NICU on ventillators but were at a good weight for preemies, (5lb 11oz. each). I fainted a lot during pregnancy but everyone wrote it off to pregnancy hormones. I broke my pelvis after passing out at a checkout line at Walmart while I was 5 months along with the last daughter. She was taken early by emergency C-section after not moving for an hour during an ultra sound. Turns out she couldn't because my pelvis was broken. (This took Dr.'s 4 years after she was bron to figure out~another story!)

Even though my pregnancies sound horrific, you have something that would have changed it all for me and that's a diagnosis! Find a good OBGYN, sometimes it's not the Dr. with the fancy degree but the guy or girl who has compassion and is willing to learn with you that makes all the difference. I can tell you with 100% honesty, I would do it all over again, even if I knew what was going to happen. I would gladly take gestational diabetes and vomitting for my Naomi! I would sign a waiver and accept the INSANE amount of stretch marks, exhaustian and tachy for my little Eden! And my dear little Ayda Grace, I would take a broken pelvis and some C-Diff again for her in a heart beat!!

[CharmedLinz]

Not to take away from any Children that have been born to members on this forum, or any child, including myself (I'm 31 now)......

But I have a different take on this question that you pose. I don't know you or your situation at all so I take full responsibility if what I'm about to say makes you or anyone else hate my guts.

Along with thinking about what the pregnancy might do to your body, I hope you are thinking about the consequence to the child.

As the posters above had said, some of their children did NOT have an easy entrance into this world. Neither did I.

I have some type of Traumatic birth defect, nothing has been confirmed but most of my problems seem to have come from birth.

This seems to be genetic in my family, I have a first Cousin with POTS and most of my symptoms, her Brother isn't completely healthy either, neither is his new 1 year old son.

We suspect it came from my Grandfather who we believe had Marfan's or some type of Connective Tissue Disease and he also had severe Ankylosing Spondylitis.

My Mother has a diminished form of POTS, she outgrew most of her symptoms as a child, but only after almost dying 3 times. Of SIDS, Rheumatic Fever, and an Internal Hemorage.

I was born blue with hypoxia and have birth defects in the form of a malformed foot and weakness on my left side. Like I said we don't know yet how this all connects, but I'm 31 and my body systems are shutting down supposedly from something auto-immune, connective tissue, genetic or all of the above.

There was a point in my life when I wanted kids someday, and then 3 years ago I got so sick I could not work.

Now there is NO way I would ever even take the chance of passing this on to another human being.

I hope this just gets taken as something to ponder, as that's all I'm saying......ponder long and hard.

My Mother has told me looking back had she known all she knows now about our family medical problems, she would NOT have had me. She loves me and doesn't regret having me, but she does regret having me just for "wanting a baby".

I've always been of the opinion that we as Humans shouldn't just breed because we can. We have the intelligence and knowledge to know that sometimes it's better not to do things even if it's something we really want, life isn't fair.

We have gained the ability to know families that carry Cancer genes, Huntington's Disease, and a probably a million others that I know nothing about.

If we have the knowledge to know we can pass those things on, should we still willingly pass them on??

Again, like I said I don't know your family history, so for all I know you have POTS as the result of a Virus, like a lot of people do. So I'm not saying you shouldn't have children of your own.

I'm not taking anything away from anybody on this forum with Children, either adolescent or grown, every life is worth something, every life is special.

I just know for me personally at 31 years old, looking back on my life, my choice would have been that I never be born. I've had a good life, I enjoy the planet and the things around me.

But I'm not Living, I'm sick and suffering, and doing nothing other than just mere surviving, and trying desperately to find even one tiny thing to make me feel better enough to even have one decent day with no end in sight.

I'm sorry if this HiJacks your thread, this is my own personal opinion and it bares no weight to my feelings towards you or any other person on this forum.

I am not a judgemental person, and I respect everyone's rights to make their own decisions, regardless of what those are, I support every person on this forum and every person that I know and/or talk to.

Hugs, I feel your frustration and difficulties.

[katT]

Michelle and GSNicole - thank you so much for the information, even though it sounds like you both had quite a go of it. Esp you Nicole...oy!! Doesn't help qualm the apprehension LOL...so hopefully there is some POTsies out there that had POTs while pregnant with good results Luckily I LOVE my obgyn and would fly across the country to see her...but she just stopped delivering babies a few years back. So I will probably see both her and one of her associates. She is very willing to learn and listen and order tests for things when I ask, so I feel she will be the same way during pregnancy.

Charmed - I am not offended by your post. I adhere to the philosophy that everyone is entitled to their own opinion and outlook and not everyone will always agree. And I completely understand where you are coming from...I think if I had a family history like that and lived with the condition you do that I would feel the same way. My father and his side of the family are all pretty dang healthy. My mom has FMS, her mom had ALS, and her father Parkinson's. My guy is lucky enough to have a great history of health on both sides of his family (as far as genetic things go). I figure, genetically, that would leave my child with a 25% chance of inheriting something. Not to mention that just because a family member has something like FMS or POTs is that an automatic sentence for another...genetics are a crazy thing. Although it sounds like your family has been dealt a bad hand healthwise, and for that I am sorry. We have thought long and hard about all these possibilities. I will be 34, so I am not a young buck wanting to pop out some babies just because I want to have a child. For a long time I thought I didn't want to have one. But after moving back home and realizing how precious and wonderful family is and all that I missed out while living away for 8 years (I've been back nearly 4 yrs now) I want to share all these experiences with my own child and grandchildren. Both of us have very close knit families and think that family is more important that money, job, power, etc. We would only be having one child (unless we had twins..oy! but none in family...whew!). I know pregnancy may not be easy, but it also might. I already know I would have a C-section due to how fast my heart rate currently goes up just in exercising.

I am not sure where my POTs came from. I had a severe case of acute vestibular neuritis landing my in the ER and hospital for 3 days in 2005. Symptoms started around that time. Then I was 100% completely fine and dandy, with NO symptoms until 2010 when I had a car accident. My symptoms developed/flared after that. I am fortunate that I am able to work a FT job and still enjoy a lot of things in life (with modifications at times). I know others on this board have MUCH worse cases, and my heart goes out to them.

Just the same, Charmed, I hear you and completely understand why you have the position you do and I appreciated you sharing. My thoughts go out to you and your family and I hope things look up for you and you get more quality out of your life instead of just quantity.

[kayjay]

I had two children before I was diagnosed but I was sick. I got sicker with my first child and was induced early. Both of my children are healthy ( Praise God) and I would do it again in a (tachycardia) heartbeat. I agree with the previous poster that things would have been much better for me if I had been diagnosed. Mine are 20 months apart and that has worked out well for our family. I do have very supportive parents and that has been a huge blessing.

[s-pot]

I have not had my own children yet but I would like to add that as a Midwife I have witnessed that when it comes to pregnancy and childbirth most often it is in the hands of the universe as to what way it all goes.

I have seen sick babies born to parents with no medical conditions or family history of genetic conditions and very healthy babies born to those who have lists of medical/genetic conditions. Until you become pregnant there is just no way of knowing how your body will react to this. I have seen women who are perfectly healthy entering pregnancy suffer endlessly with illness and women I thought would suffer terribly, blossom and enjoy every moment of it.

All we can do is ensure we are doing all that we can and what IS within our control to be as healthy as possible before heading into pregnancy...this includes having a healthy mind and positive outlook!! Discuss planning a pregnancy with your caregivers. Form a plan for treatment for whatever conditions you have for during the pregnancy... this is another thing that can reduce risk.

As I say I havent had my own yet. I would never be so ignorant to assume that just because I know all the ins & outs of pregnancy, childbirth etc that I will breeze through it. I, like you, have many questions still as i know Pots/Dysautonomia may complicate a pregnancy. However i do know that when my time comes all i can do is prepare my body well for it, ensure I have good Obs/gyn that knows their stuff and the rest is in the hands of the universe!

One thing I am sure of.... i could never miss out on the opportunity in my life to birth children into this world because of 'what if's'. for all the negative 'What if's' that could happen I can think of a million positives...what if I birth a beautiful girl that can sing and dance and enjoy life. That brings a ray of sunshine and joy to everyday. Or a boy.....who climbs and messes and makes the world laugh.

Go with what your heart tells you....the rest will follow in whatever way its meant to! Good luck!

[HopeSprings]

I was worse with my pregnancies, but went back to my regular potsy self after having them. I think the key is having help. I didn't have much help during my pregnancies and don't have much help now raising them. I have my husband, but he works. It would all be so much more managable if there was someone to lighten the load a little. Just make sure there's a support system available.. otherwise it's really HARD.

[icesktr189]

I have one child who was born march 2010 and I crashed from POTS in January of 2008. My pots wast too bad goung into it. Third trimester was the worse for me as i was fainting and bed bound. Unlike most, I did pretty well after birth until 6:months pp. I havent been the same since. Cant drive or work, house bound. Raising kids is tough, so your best bet is a great support system. I felt like death during the newborn stage waking up every 45 to 2 hour. Its a bit easier now but at two years old my daughter has SO much energy when I dont. I also think it helped that i was 20 when I gave birth. Labor wasnt easy but we both made it out safe

[cma]

Hi katT. I don't know what's right or wrong, I can only share my experience.

I'm currently pregnant with my first child, 7 months at the moment. I was thinking really hard about this as well and couldn't decide where I should do it, because I was scared that pregnancy might make my POTS symptoms worse.

I wasn't taking any medication prior to become pregnant, although I did take beta blockers and florinef at one point. I wasn't bed bound, but couldn't work, so, if you can handle a Full time job I think you are in a better position than I was. All I did and still am was exercise as much as I can, drink water and use salt.

First two trimesters were great, I had almost no morning sickness and the second trimester was just a breeze. I wasn't as tachy and had energy, lots of it! At one point I was even thinking that maybe that's it, maybe I'm out of that terrible POTS hole.

It's getting a bit tough now, when the baby is growing bigger. I'm feeling more lightheaded, but no fainting and I'm more tachy and out of breath. So far no stretch marks either, hoorayyy for that

Even though I was diagnosed, here in Ireland, doctors either don't know much about POTS or they just don't take it as serious as in the US. My pregnancy is treated as normal, I don't get any special attention, and I was told that I will be able to deliver my baby naturally, if everything goes normal in the future. I asked, if tachycardia is something that I should be worried about and if it's safe to do it naturally in my case, my doctor didn't seem concerned at all. So, in my opinion, if you have a good OBGYN, who is willing to help you by educating herself, you are very lucky.

I have no idea, how I will be feeling during labor or after it, but nobody knows, even healthy woman sometimes get sick or even worse. All I know is that this is something that I really wanted, feel blessed that I could get pregnant ( took quiet a bit of time) and I am just taking one day at the time and hoping for the best.

So far pregnancy hasn't made my POTS worse.

[MomtoGiuliana]

Many members here have had uneventful pregnancies. POTS in itself does not appear to be a reason to avoid pregnancy. I think it is probably impossible to predict how your body will respond to pregnancy--some POTS patients feel better, others worse (like I did--although I also did not have a diagosis which didn't help). It seems that many do tend to experience relapse post partum or find they have energy issues in the first yr of the baby's life. For this reason it is reasonable as others have said to think through your support system and ensure you will have adequate support during and after your pregnancy if you will need it.

You can search for "pregnancy" on this forum and you will find a lot of discussion, if you want to read more about individual experiences and questions.

[ladyt]

hi

I havent been on this forum for many mnths now. I ust got a lilte baby boy. I would love to share my story, but a really to tierd rigth now.

I got a lot better from my pots symtoms in second part of my peregnancy, and then i got worse agin. I ended up whit a c-section.

I have a wounderfull partner how is a lovely father. I could not do this whit out him. But we are all difrent. I didnt think i would gett pregnant, so it was a bitt of a suprise.

[shan1212]

I was diagnosed with POTS during my second pregnancy, but I've always had some of the symptoms, and I started having POTSy episodes (without knowing what they were) when I weaned my older daughter in the fall of 2010 and got my period back. When I became pregnant last summer, I thought I had morning sickness (though I never threw up) because I felt awful all day long. Thankfully my OB had had a previous patient with neurocardiogenic syncope aggravated by pregnancy (who had had two or three babies). I had spent a couple of weeks calling the nurse in a panic about my "morning sickness" before this (she told me to try gingerale) so it was such a relief to have somebody say, "No, it's not all in your head." This was a Friday, and she got me on a home IV starting that day and in to see the cardiologist on Monday, where I was diagnosed with POTS. The IV helped (I was on it for a week) and then I just basically convalesced as much as a stay at home mother with a toddler can do. Thankfully I was able to line up help in the mornings, and my daughter napped most of the afternoon. It was still a really hard time, and I do remember that my worst fear was that I would have a miscarriage because I knew I wanted more than one child but I didn't think I could start the process from scratch again. If I wanted a third child would I do it again? Yes. I know it would be hard but I made it through and I could again. The second and third trimesters were much better - some fatigue (but hey, that could have been being pregnant with a toddler to take care of) and a couple of POTSy days but nothing too bad.

My first child was a c-section for "failure to progress" (I was induced for no particular reason and I believe I got the epidural too early), so I started considering trying for a vaginal birth with my second child. My only concern was that the POTS would be an issue. I switched to a midwife practice at the large university medical center in hopes of increasing my chances of avoiding a second c-section, and I'm happy to say that my second child was a vaginal birth. I did have the epidural again (this time at 10cm instead of 4cm); the nurse anesthetist was briefed on my POTS and increased the strength of it gradually. I was more mobile than with the first epidural and my BP was fine. Although I believe that switching practices really helped me have a vaginal birth, I will say that the midwives were not as understanding of my POTS as my old OB was. After an internal exam at 38.5 weeks, I started having contractions and had a really bad POTSy day. I called the midwife on call in a panic, and she acted like I was having an anxiety attack. I would have appreciated a little more understanding, but on the other hand, I'm sure my old OB would have just said, OK, come in and we'll do a c-section. The POTS symptoms and the contractions subsided and I went into labor and had my baby on my due date. I did not feel POTSy at all during labor (that's not say it was easy, of course).

So anyway, now my baby is almost 3 months old and my POTS symptoms, while not usually debilitating, are affecting me daily. I guess this is because my blood volume is still decreasing? I'm hopeful that I'll figure out the right combination of salt/fluid intake, rest, exercise, and meds, and things will improve.

[ladyt]

shan1212 so glad u avoided the c section this time. and hope u find the balance.

[Frugalmama]

I have been symptomatic for many years, but acute symptoms began during my second pregnancy. I was told it was "pregnancy related" and, lo and behold, it didn't go away when he was born . We also went on to have another child (our third), who is now 21 months old. Aside from me feeling as awful as I normally do, my pregnancies were very uneventful POTSy wise. Our children have all been extremely healthy (the boys were 8lb10oz and 8lb13oz), and both boys were born naturally without drugs. With my first labour, it was very long (24+ hours), and I ended up having an epidural so I could sleep before I had to push. I also had fentanyl before the epidural, and it looped me out for 12+ hours afterwards - I would never take it again if I could avoid it. My recovery period was WAY faster without meds. For the last 9 weeks of my last pregnancy, I had weekly IVs to try and stabilize me a bit, and I also had one the day after I gave birth which helped me to bounce back a bit quicker.

While I understand where Charmed is coming from, I am in completely the opposite camp. My mom has fibro (and, I think, MCAS), and has been extremely ill throughout my life. Yes, she missed a lot of events and such, but she is loving and helpful and I am so glad that we have such a close relationship. I personally am very ill right now, and only get to go out of the house 1-2 times a week for a very short period of time in controlled circumstances. Yes, it's absolutely difficult, but I am very glad that I was born . There is a part of me that worries that one (or more) of my children will end up in this same boat, but I know that they will be able to handle it. I have learned so much through this experience, and I wouldn't trade these trials for anything.

One thing I will mention is that although getting through the pregnancy is obviously the first step, it's what comes after that is the most challenging. Depending on how disabled you are, you might need A LOT of help with the baby. My husband is literally super Dad, and he is "on" from the moment the kids wake him up in the morning until he goes to work....then he comes home for lunch to feed us....heads back to work...and comes home to wake the kids up and cook supper. We also have full-time help for every moment that he is gone during the day, which is complicated to organize and expensive . So, please make sure that you have a fantastic support system, and that you look seriously at your abilities and limitations. That being said, motherhood is the most amazing thing. My kids (now 5, 3.5 and almost 2), love me in spite of my limitations, and I believe are very compassionate as a result. There's always a silver lining