Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Recommended Posts

I'm in my early 30s, and it's been upsetting me quite a bit lately that, due to my Dysautonomia, having a child may be something I'll never experience.

I'm concerned that if I fell pregnant, the baby would perhaps be affected / or also have autonomic dysfunction. I'm also concerned that I'd get far worse whilst pregnant, have higher risk of complications etc. 

I'll be sure to chat to my specialist about this when I see her next, but I'm wondering if any members on the forum have been pregnant whilst diagnosed with Dysautonomia, and what your experiences were? 

I've also been investigating whether it is feasible for me to have a surrogate, or adoption. Avenues such as that.

Like a lot of women, it's a dream of mine to one day be a mama. 

Many thanks for any replies! 

 

 

Share this post


Link to post
Share on other sites

@Scout yes, some women get more symptomatic during pregnancy and others feel much better while pregnant. There is an article about pots and pregnancy on the information site of this web site, you may find it helpful. There is no reason not to have children due to Dysautonomia alone, it does not affect the baby or the pregnancy itself, just how your body reacts to the changes, and that can be treated. I do recommend a high risk obstetrician only because you may experience changes in BP that may have to be addressed. 

Regarding your fear that the baby also may have Dysautonomia: POTS runs in my family, we have 3generations of women diagnosed with it. I have a 15 year old daughter and I am concerned about that, especially since she has already displayed some symptoms and she is hyper mobile ( which she got from her Dad ). But when I asked my autonomic specialist about it , he treats adults and children, he said that we only get 50 % of genes from our mother, so although there is a chance it is not a certainty. 

Don’t let Dysautonomia rob you of one of the greatest things in your life, you can absolutely have a safe pregnancy and a healthy baby. 

 

 

 

Share this post


Link to post
Share on other sites

Thanks so much @Pistol

Very helpful information.

My BP is definitely something I have worried about especially in relation to potential pregnancy. I know pregnancy can sometimes cause high BP, and I already have such severe surges sometimes, so it's something I really need to research and consider, but like you said — having a good ob can mean having that well taken care of. 

I'm 31 now, and ideally would like to have a baby around 33, or not much later than that if possible, so I am hopeful that my dysautonomia improves some and that things work out! 

Share this post


Link to post
Share on other sites

Maybe this will be an unpopular opinion, but i think that if you're affected by something as bad as dysautonomia, you shouldn't have children.

But thats my opinion, and ultimately it is your choice. 

 

Share this post


Link to post
Share on other sites

I have three children. With all three I had horrible tension headaches and had to take a muscle relaxant until I gave birth, but other than that I was just fine. In fact, my vertigo and hot flashes went away due to the increased blood volume. My son likely has POTS but if he exercises and doesn't just sit in front of the computer all day, he's fine. He works a job where he's on his feet for hours. He knows to drink Gatorade when he starts feeling symptoms. So far he has not needed medical intervention. My daughters have no sign of having POTS. That being said, my symptoms have never been terrible until middle age, and I still do not have much in the way of orthostatic issues. If my POTS was bad I might think twice about having children.

Share this post


Link to post
Share on other sites

My PoTs was debilitating when I first got diagnosed I wish I had known before I had my son, if I knew I would have thought twice about having a child. Everyday I am guilty of not being able to do something for him that a normal parent can and it rips me apart. My son is great and is understanding but because of all of this he has health anxiety and doesn’t want to go to a doctor because he is worried he will end up in hospital just like I have so many times. It’s definitely something to seriously consider 

Share this post


Link to post
Share on other sites
On ‎10‎/‎5‎/‎2019 at 8:41 AM, DizzyPopcorn said:

Maybe this will be an unpopular opinion, but i think that if you're affected by something as bad as dysautonomia, you shouldn't have children.

 

On ‎10‎/‎5‎/‎2019 at 11:02 AM, katcanny said:

I wish I had known before I had my son, if I knew I would have thought twice about having a child.

I second these perspectives. I would have chosen not to have children had I known they would effectively grow up without a mother & acting as my carers from a young age. 

If you are relatively well what about adopting or fostering an older child? 

B xxx

Share this post


Link to post
Share on other sites

I was told by Dr. Grubb years ago that it was possible to have a healthy pregnancy and baby in spite of having dysautonomia.

Like you, I had hoped to have a baby earlier in my 30s, but waiting until my mid-late 30s when I was healthier ended up being a big benefit for me. I was able to do regular yoga through pregnancy and stay active. I only had issues with near-syncope in my third trimester due to baby's position on my blood supply. 

Another important factor to consider (aside from pregnancy and labor) is if you have support at home for caring for the baby. It is exhausting, and having people around who will help with cooking and chores and lending a hand on a regular basis makes all the difference in quality of life for the baby and for mom.

Share this post


Link to post
Share on other sites

Yes, the actual pregnancy & birth is only a small part of having a child, & however bad that may be it is only transient. All reports seem to suggest a low rate of complications, however there is likely to be selection bias in that the most unwell patients are not becoming pregnant so those delivering babies are likely to represent those with milder illness. 

The main consideration though is not how things will go during that 9 months, but whether you will be physically able to be the parent your child/ren need & deserve to have. 

Only you can answer that, & nobody really knows whether things will improve, stay the same or get worse in the future, but I would be basing the decision not on what the pregnancy and birth would be like primarily, but what your ability to meet the child's needs from baby to adulthood is likely to be, as this part lasts far longer. 

B xxx

Share this post


Link to post
Share on other sites

I think it's a noble thing to consider the child's health and future when deciding to try to have a baby. However, it's dangerous logic to make the leap that no one with dysautonomia should ever have children. With that line of thinking, we'd have to consider all genetic conditions that could be passed down to a child (breast cancer, alzheimer's, clotting disorders, heart disease, Down Syndrome etc.). Because no two parents have perfect DNA, there is always the chance that a child could inherit a condition that would significantly impact their life. It's a risk with every single pregnancy. I think genetic counseling is always a good option if someone is concerned about these issues in their family. Many people with dysautonomia or autoimmune diseases live full and happy lives (I am one of them) and would never have wanted their parents to not have them due to the risks we all run in existing in this broken world.

 

Share this post


Link to post
Share on other sites
23 hours ago, JaneEyre9 said:

I think it's a noble thing to consider the child's health and future when deciding to try to have a baby. However, it's dangerous logic to make the leap that no one with dysautonomia should ever have children. With that line of thinking, we'd have to consider all genetic conditions that could be passed down to a child (breast cancer, alzheimer's, clotting disorders, heart disease, Down Syndrome etc.). Because no two parents have perfect DNA, there is always the chance that a child could inherit a condition that would significantly impact their life. It's a risk with every single pregnancy. I think genetic counseling is always a good option if someone is concerned about these issues in their family. Many people with dysautonomia or autoimmune diseases live full and happy lives (I am one of them) and would never have wanted their parents to not have them due to the risks we all run in existing in this broken world.

 

Exactly. Thanks so much @JaneEyre9.

Very well put. 

I think downright ruling out having children because there's a slight chance that the child could have dysautonomia, is not that dissimilar to eugenics. We never know what a child's health will be with complete certainty, and the child could have no health issues whatsoever, or may have a condition entirely unrelated. Life is arbitrary like that, isn't it. There's unfortunately always a gamble, in almost everything. 

The child's health is my foremost priority. That's why I'll chat to my specialist and research as much as possible. I'd never rush in to a decision this big. 

Thanks again for the positivity 😊

 

Share this post


Link to post
Share on other sites

@JaneEyre9 I think its a matter of philosophy then. I have severe food/medication allergies and i consider that to already be a criteria to not have children.  If you add dysautonomia to the mix, thats a 100% clear no from my end.

But again, my opinion and my philosophy. I'm just not sugar coating it. 

Share this post


Link to post
Share on other sites

@DizzyPopcorn

I think it's fair for you to say that you don't want to have a child based on your significant illness and experience. Not everyone has the same level of illness and complications. It's fully reasonable for each woman to make her own informed decision based on her own experiences and health.

Regrettably, there is no guarantee for a healthy baby regardless of a parent's health. And there is no guarantee of an ill child either. 

Adoption is a good option, but even adoption can have unfortunate and very stressful outcomes for the adoptive parents as well as for the child. Each person/family has to do what is best for them.

@Scout

I was in your shoes not too long ago. I'm happy I decided to have a baby. The only thing I wish i'd known was how hard the first year would be on me. Luckily, I had a lot of hands-on support and things are getting better! I wish you the best and am happy to message with you any time about questions you may have.

Share this post


Link to post
Share on other sites

After developing full blown POTS during a second pregnancy (and realizing afterward I had been experiencing dysautonomia symptoms for years without having a name for it, and that I was the third generation of females in my family to experience these symptoms), I am still glad that I have my children. Pregnancy was hard and so was the first year post-partum. I think if I had gone into it knowing what my diagnosis was, I would have known how to manage it better and taken it easier and probably been less anxious during the whole thing. If you have a good support system and can keep your overall stress low so that your body can heal, it is doable. I had to learn to lean on my faith when my strength was low and my anxiety was high, and some days were really bad. But 3 years after I only have orthostatic symptoms when sick or stressed, and am off of medication. I can parent just fine, and the experience has taught us to slow down and live more intentionally as a family. 

Share this post


Link to post
Share on other sites

@JaneEyre9 Thank you so much. I really appreciate you sharing your story! I'm very likely to message you and discuss further. I have a lot of questions 😊

@Hippopotsamus That's a very encouraging story. Thanks so much. I'm certain that, if I do end up having a child, it's going to be very hard for the first year or so. But I luckily do have a good support network, so would have quite a bit of help.

I'm so happy to hear that things worked out really well for you and that you're enjoying parenting so much! 

 

Share this post


Link to post
Share on other sites

Many women with POTS and other forms of dysautonomia have children.  Keep in mind that while not entirely predictable, for the majority, symptoms improve over time--and also can be improved with medication.  Some women (I think I have read as many as a third or more) actually feel better during pregnancy bc of increased blood volume.  As has been mentioned, these conditions are not necessarily inherited.  I am the only person in my family to have any indication of symptoms.  (I do think some people have mild undiagnosed dysautonomia--I think it is underdiagnosed).

I developed POTS WITH pregnancy.  Looking back I had mild and unexplained symptoms prior to pregnancy.  So pregnancy was very hard and the year that followed was even harder.  However, I recovered greatly after that and other than some episodes of relapse I have been well.

Even when I was unwell and unable to do much physically, I was able to provide love and care to my child and even breastfeed (just a lot of sitting and lying down that first year).  In fact I believe that my child reads and speaks at a high level bc in that first year we had so much one on one communication and close contact--talking, reading, singing, face to face. 

Ideally you want to be under the care of your specialist and a high risk ob/gyn.  Not bc the pregnancy itself is necessarily high risk but bc they would know the most about the use of medications during pregnancy, if needed. 

As others have said, making sure you have support for the first year or years is important bc it is hard to know how well you will be and a young child takes a lot of energy on less sleep/rest.

 

Share this post


Link to post
Share on other sites

I agree strongly with JaneEyre9 — your decision shouldn’t be made on POTS alone, but based on an assessment of your whole situation.

I was diagnosed with POTS in 2015 and had a baby in 2018. My POTS is mild compared to some (i.e., have never fainted, I was able to keep working (I also have a very flexible job)).  I was also afraid that pregnancy would make me worse, and that I would stay worse.   Pregnancy did make me feel terrible — some of that was POTS, some of that was pregnancy, some of that was being pregnant in a city during the summer. And a couple of months after giving birth, I did flare. In fact, I posted on this forum several months ago, because I was not feeling well, and didn’t feel like I was being the best mother to my baby. That time sucked.

As my baby got a little older and there was a little more time to spend on myself (6 months is way different from 3 months), I started to do more things to manage my condition. I found a new cardiologist and started a different beta blocker, and I started the CHOP exercise protocol. Several months after making those changes, I am actually feeling better than I did before I got pregnant, on most days. My next steps are to keep increasing my exercise intensity, and to address my diet, hoping for further improvement. I don’t know where you are in your journey, but if you haven’t yet tried everything, remember that you might yet feel better.  (I hadn’t previously been able to keep up exercise, which is turning out to be really important, and I’m starting to understand that I basically need to organize my whole life around it.)

I agree with the posters who emphasized the importance of a support system. ALL new parents need/deserve a lot of help. You will want a partner who is totally in it with you, and doctors you trust, as many friends/family as you can get to come around. Or if you don’t have one of those things, you’ll want money enough for take-out for months (!).

Hope this helps. Happy to share more/answer any questions. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...