AFTER Pregnancy

[UnicornIsis]

Hello,

I have searched back posts on here and haven't found much on what I'm asking. I may not being looking in the right place or searching on the right terms.

I recently got married in September. Before the Wedding any time anyone asked me about kids I told them what I had been told from the start "get pregnant and stay pregnant" and "being pregnant is the best thing you can do, as long as you're pregnant you'll be healthy". I believed that. My cousin had kidney problems and was getting ready for surgery and got pregnant by accident. She went into TOTAL remission while pregnant. A little less than a year and 1/2 after her daughter was born she got just a sick as she was before. After our Wedding I started actually "thinking" about having a child. I've ALWAYS wanted kids, lots of them, and always been around them. I'm from a large extended family and worked in daycares in high school. I'm the best I've been since I've been sick and my meds are straightened out and have been the same for a bit over a year now. I know that right now I can not take care of a child if I were to have one.

My question is this: for those that have had children AFTER being sick with NCS and/or POTS, after giving birth, were you able to take care of the child on your own, or you and your husband/wife able to take care of the child, without help? I mean were/are you able to take care of your child/children even years later on your own, without say your mom/his mom/a sister, or someone else always there to help you?

Also I know some get better during pregnancy and some don't. For those that do, how long did it take for you to get sick again afterwards? Or did you not get sick again afterwards and how long has it been since you gave birth?

Right now my husband and I have decided not to have a child and are taking 3 measures of precautions not to because I'm not healthy enough to take care of a baby without help from someone other than him. If I do get that healthy while we're both young enough -- say less than 40 when it becomes risky -- then we will decide at that time if we want to try. This is VERY HARD for me. I have cried many times over this and still am and I've only been thinking about this since early Novemeber.

Thank you all for reading this and for any replies you give.

[taylortotmom]

I think the responses you get to this question will be as varied as the individuals on this board. There are no two cases of dysautonomia exactly alike and thus, the severity can vary greatly. Whether or not you will be able to care for a child is not easily answered. I have severe sxs but also have "severe" txs (pacemaker, daily iv's) and two children. My children are seven and five and I feel totally comfortable taking care of them independently.

However, as sick as I am now- there is no way I could raise a baby without significant help. Babies and toddlers require a differrent level of physical care than I am able to provide. My sxs hit after the birth of my second child and did not get real severe until he was around three.

It is good you have considered the repurcussions of having children but really, only your doctor can help you make an informed decsion. But, honestly, there really isn't a good way to know what will happen with you personally. You may get better over time or worse after childbirth. For some, the blessing of children outweighs the physical price. For others, the chance of not being able to be a "healthy" mom is just too great and they choose not to have kids. It is an extremely hard question to answer and no one has a crystal ball. I wish I could provide more support but I appreciate that this is a difficult decision for you. Good luck to you.

Carmen

[MomtoGiuliana]

I would just echo Carmen's response regarding--there is no crystal ball, especially because POTS can be so variable from person to person--and also her statement that babies and toddlers require a great deal of energy--which clearly you are aware of, given your family and work experience.

My experience was that I was unable to care for my baby by myself for the first months after she was born. I was sick with POTS during the latter part of pregnancy and even worse early post partum. After 5 months (and a diagnosis) I got better and better. I am the opposite of most people--pregnancy made me worse, not better. Fortunately my mother was retired and able to come live with us during that time.

I would recommend talking to your doctors about your concerns too--although they will probably not be able to predict the course of your condition, they should have some idea about what is likely to be your experience based on their experience with other patients.

Even a healthy mother needs support from her family and community--especially in the early years. It would be good to review what support is available to you, and what support would be available to you, should you become disabled as a mother, and need significant help with infant or toddler care.

I so understand your pain. Ideally I would like more than one child, but I will not take the risk of becoming disabled again.

Please don't give up on your dreams of a family. You may improve over time. Also as this condition becomes better understood, more effective treatments may be available in the future.

Katherine

[DSM3KIDZ]

As the other ladies mentioned their is no clear cut answer and that's scary. I have 3 kids (7,4 & almost 2) I didn't get sick till my last son was 4months. I needed alot of help caring for him for about alittle over a year. If my husband wasn't here....someone else had to be. That alone was hard because I wanted to be the sole provider for him. But now that he's almost 2 I find myself needing less and less help from others. My health is better than last year but still not good enough to perform all tasks as a healthy person and sometimes I still need help cause when your really sick the needs of three kids can become overwhelming.

So basically I'm saying you might need help for awhile but they do get alittle more independant and less demanding. Than you have to consider the toddler years where they are full of energy. I let my kids run around in the yard while I sit under an umbrella with my gaterade or pull a chair up to the swing set and push them on the swings.

Life will definitely not be the same as a "healthy mother" but I find just compared to my healthy mom friends that I get way more quality time and have the ability to sit down and play games all day or snuggle up with book or movies, colors, homework or music. My only job is loving up my kids and I'm ever sooo grateful for that.

It took me long to accept not being the "healthy" on the go mom but now I see all the positives that have come from this derailment. My kids are so caring and compassionate in a way other kids might not be.

I'm sorry this is so long I just have a tug in my heart for those that want children and thought my personal experiences might help some.

I always wanted 5 kids but I'm super scared of the unknown with this illness and my husband would probally not agree on me being pregnant because I could get worse.....know one knows.....I could get better! Anyways, my point being if I get better we will adopt 2 kids in a few years. Have you considered adoption? Or even foster care for 1 child. That would give you an idea on how things might be and you can foster infants so maybe it would be the missing link in your family! Just throwing out some options.

Well I hope you don't mind my rambling....Good luck on your decision. Follow your heart and instincts they will lead you to a path of happiness.

Dayna

[Wufflebear]

This is a hard one, and I have to echo the earlier posts. I have had NCS since I was 5 years old. I developed POTS later in life. I have one daughter who is now almost 5 years old. Pregnancy changed things for me. I used to get several minutes of warning before I would pass out and now I am down to say 20 seconds. I used to be able to make the symptoms lesson by sitting and go away with laying down (although to really go away I needed a good nap). Now sitting does nothing and laying down only marginally helps. Between my daughters birth and age one, my husband worked nights and I worked days and I was miserable and desperate. Yes it can be done but it was very hard and I desperately needed help that was not there, I found that It would strike in the middle of the night (you know when you have to get up suddenly for a crying baby etc...) I would be carrying the baby and we would both go into the wall. I learned to walk sideways with an arm always out in front and go much slower. As she got older we developed a very strict schedule as my body had to have that. Now that she is almost five she is better about letting me lay down. I also do crafts on the bed, board games, stories anything that maximizes my horizontalness on bad days. we still have "quiet time" where everyone has to go to their room and stay there between 12.30p and 1.30p or 2p.. She gets overstimulated so easy that this works out great for her too. Anyway, this is just what happened to me and everyone is different. Follow your heart and do what your gut tells you is best. It is definately worth it, and I would do it again in a heart beat.....but it is hard.

[calypso]

My POTS came on postpartum, so I don't know much about how long it would take for you to get sick again, or if you would get sick again. I got my first tinges of POTS three days after giving birth, so as you can imagine, it wasn't easy trying to figure out what was going on while taking care of a newborn. Plus, I had preeclampsia, and that was another complicating factor -- my daughter was born at low birthweight, and I was totally trying to focus on how to get her weight up quickly. Anyway, between hospital ER visits, an ambulance ride and eight doctors coordinating my care, I somehow managed to take care of Delaney without much help other than that from my husband, who dropped everything to help me when needed. I won't lie and say it wasn't difficult; there were days when I barely got out of bed. But thankfully, until your baby is 5 months old, he/she won't care much -- all they want to do is eat, sleep and snuggle.

Some here who had POTS pre-pregnancy say they got sick again around six months postpartum. That's when you need to be more active with your child, but the peak of activity is at 9 months on to age 3 or 4. They are constantly moving and need constant supervision. I would recommend that if you are not near family or friends who could help you, that you either move closer to them, or make some connections in the event that you did get sick again. Hopefully you will not get as sick or sick at all!

Please feel free to ask anything you want. I really enjoy being able to support other women here interested in raising children. Good luck to you.

Amy

[Aprilmarie52]

I had pots before I got pregnant, and my pregnancy went fine. I agree with everyone else. No two pregancies are alike and noone can tell you what is best for you. I am very lucky in that my husband and I can take care of Gabby by ourselves. Some people with dysautonomia cannot. Good luck in whatever you choose to do. Keep us posted.

[Jenn202]

I really hear your frustation on this one. I at 34 years old and would really like to try and have a child at some point but lots of pros and cons to weigh......

I would also mimic that no 2 people or pregancies are alike.... even healthy people cannot count on a smooth pregnancy....

For myself I do have family around me that will help me out if I decide to get pregnant.....

I have battled with thoughts of not being an energetic mom like my mom was, or having my child resent me b.c I could not be at their school activities or plays if I got sick.

My husband and I have also discussed how it would effect out relationship and the added stress of a child.

I just put out the worst case scenarios for myself to see how would I deal with it if it really happened and would we have some back up or preparation for it.

I think it is a very personal decision and one that should be talked about very thrououghly and openly with your spouse/partner.....

I am still really holding out hope that I can try for a baby at some point..... I have come to the conclusion that for me not trying would be far more hurtful emotionally and physically than having a healthy child and possibly dealing with my illness getting worse....

Although my greatest hope is that this would nto be the case...

Anyway sorry for rambling here , but I feel so much for women in my boat..... and I hope that we all will come to the decsion that we feel good about and is right for us.

Good Luck to you

[UnicornIsis]

You've all made good points and given good advice. I know this isn't REALLY something to wish for, but I wish there were more of us with this so we could all get more information/experiences, help and support from each other.

Unfortunately moving closer to family isn't much of an option for us. My husband is in the Navy and plans to make a career out of it. There's no chance either of my parents can retire anytime soon and neither can his dad. We're in north Florida. My parents are in Virginia and he has family in middle and southern Florida. Because of me being sick we'll be limited to the number of bases we can go to, all US, but depending on what category they make me depends on whether is Major U.S. bases or the 5 main Navy bases in the U.S. So we're going to be moving some most likely, but we don't get much of a choice as to where we move, at least not moving near family or anything.

I am not able to work. I'm doing pretty well and have been for almost a year now. But I just don't have the energy or constant level of doing well to work. Also I'm not allowed to drive so that's kinda hard too. The other concern is that the neurological muscle disorder I have, tentatively diagnosed as Dystonia causes me to lock up and I don't have control, similar to petit and grand-mal seizures, but I get to be awake for it all. Right now I'm not allowed to be left alone, doctors orders.

Someone suggested adopting or fostering. I don't think they let me do either because of being sick. I haven't looked into it, but I'm pretty sure they'd say no. I'm kinda holding off on finding out if they would let me because its kinda a last resort hope thing.

We don't think I'll have any trouble getting pregnant, my family is EXTREMELY fertile, that's why we're taking 3 precautions right now.

Y'all are right. I'm trying to decide if it's really fair to the child/children to have a sick mom and possibly pass on "active NCS/POTS" to them versus the emotional pain of not having a child as someone else said it perfectly. We've found out that both sides of my family have a history of NCS and POTS and Dr. Abdallah said that's probably why I got it as bad as I did when the CMV-MONO triggered it. My brother has mild signs, and so do some other memebers of my extended fmaily, but they're all what I call "non-active", its not enough to actually give them trouble or anything like that.

Thanks for listening everyone and for giveing your opinions and advice. I really do apperciate it.

[Evie]

Good luck with it. Its such a tough question.

I tried to pick up my boyfriends neice the other day (one year old). My arms shake so much from it. I sometimes wonder if i wobble on my good days how will i manage when im having a bad day? you cant make a baby let you sleep or rest.

I hope they send you to a place you like do they provide day care etc at the bases? maybe the other women would become a support network if you family is unable to be your support network. I hope things work out for you.

[Eli6596]

This is really a difficult issue. Like others have said, there are sooooo many different levels of POTS symptoms, and so many individual reactions of the POTS to pregnancy. I did not have any disabling symptoms until my first pregnancy. I was on bedrest for 2 months with the first pregnancy and got by without drugs. After delivery I could not have taken care of my daughter or MYSELF without my husband for the first 2 months. I cried with exhaustion. I recovered to my prepregnancy self about 2 months postpartum except for mild dizziness with sleep deprivation or colds.

My husband and I took 5 years to finally work up the courage to have another child. My health went down the toilet and never recovered after the second pregnancy. I needed a beta blocker at huge doses just to get to the bathroom during the second pregancy. I was in a wheelchair outside the house during pregnancy. Now, tons of medicine do prop me up so I can go to work, cook dinner most nights and put the kids to bed. I am always tired. I would never have another child for many reasons. First of all, I could not go off my medicines without being confined completely to bed. I could not safely conceive a child on these meds without having a three eyed cyclops. Even if I and the baby lived throught the pregnancy, it would be totally unfair to my other 2 children. I can bearly keep up with two. My children are the greatest gifts from God. They are the joy of my life. They are a blessing.

Sorry about rambling. Sometimes it is therapeutic to vent. I do have a few pieces of uplifing thoughts. First of all, my friend who has juvenile arthritis and whose husband is paraplegic are now adopting a baby. A birth mother chose them because she knew that they had been through a lot and must have developed wisdom from hardships. It was viewed as a plus to some. Of course, her doctors had to write a letter stating that she could care for a child.

Second piece of positive thought is coming. My daughter has whined at times because of me not taking her somewhere when I don't feel well. But she is much more wise than most kids about illness, I think. I very, very rarely go to the mall. I went recently and used a motorized scooter. Teenagers were laughing at me in the store when I had trouble navigating past the narrow aisles. I told my daughter, and she said that she knows that if someone is in a wheelchair, etc., you should not treat them any different. We went to see a movie together. I had to get up after 45 minutes to do repetitive squats to avoid syncope after sitting too long even with my legs propped up. Teenagers in front of me said " Ohhhh, I did not know the circus was in town!!! Ha ha" I did not hear them. My daughter (9 years old) bravely said to them, "Stop it. She has a really good reason for doing that" I was so proud of her. My daughter did not even tell me until after the movie because she did not want it to ruin the movie for me!

Also consider that the personality of the child makes a big difference. My daughter was easy. My 4 year old son is running circles around me. My husband and I jokingly say that if he had been born first, he would have been an only child.

I hope your health gets better with different or more medication so that you can at least adopt if appropriate.

Karyn

[MomtoGiuliana]

Karyn

What beautiful stories--although it is terribly disappointing that some people do not learn compassion and tolerance by their teen years.

I am not religious particularly, but I always remember the line from The Sound of Music--something like--"when the good lord closes a door, he opens a window." I think many of us have found that parenting with POTS brings both hardship and challenge, but as well, opportunity and good experiences for us and our children too. Your experience pregnancy and postpartum sounds a lot like mine--except that I have decided to stop at one child. I am so glad that your friend will be able to adopt.

UnicornIsis--Good luck with your decisions in the coming years.

Katherine

[Evie]

Yes, those are lovely stories! (sorry to hear about the teenagers though... in years to come its likely they will look back and be ashamed of themselves)

Your daughter sounds lovely Karyn That is really brave for a 9 year old to stand up to teenagers!

[ariella]

hi

I'm mom to five kids ranging in age from 13 to 4. I have been sick since my 2nd pregnancy. I was not diagnosed until after the birth of my 5th, when the symptoms were already bordering on being dangerous. The last few years have been very difficult, especially since I have an additional neuromuscular complication not related to the POTS. At this point I don't think I would survive a pregnancy and my biggest fear is "accidentally" getting pregnant. How would your dystonia be affected by pregnancy? Is it the final dx or part of the picture of something still not totally diagnosed?

I don't have a lot of outside help. My family lives 6000 miles away. It is very difficult being ill and having to care for a family. Then there are the times that they keep me going. I've learned to distinguish between doing something difficult and refraining from doing something impossible. So, while at this point I can't do "normal" things with my kids--no treks to the mall, no day trips, etc, I do manage to be very much a part of their lives. It's always a balancing act. You cannot expect the POTS to necessarily improve with pregnancy and birth. It is unpredictable. Giving to a child on a steady basis is a huge responsibility. What I find challenging is when I feel like I can't even take care of myself, my 4 year old is pulling on me because only I could give her a drink (nothing like Mommy). Somehow I manage.

This is a huge decision. Just because you may not be able to go on rides with your child at an amusement park shouldn't prevent you from raising a child in a loving, nurturing environment. Not being able to walk or wheel to the kitchen or lift the baby or deal with an emergency is a different consideration. You sound like you have a lot of love to give. If somehow you can get to a point where you can manage your sickness reasonably with accomodation, and your husband is supportive, well, there's food for thought.

Wishing you lots of love and peace in your decision.

ariella

[OCsunshine]

I am very glad that this topic has come up. I don't expect anyone to "answer" the question, but it's good just discussing it and hearing other peoples' experiences.

My husband and I have been married for only 2 years (we're 25) and we've been content not having children. I have very recently been wanting to think about having children, though. I feel it in my heart. I am unable to work or go to school, and I realize I have the opportunity to be a loving, stay-at-home mom. BUT I am sick very often with the NMH and CFIDS symptoms, and I can't imagine having to be up all night, every night, with a baby. I regularly get 11-12 hours of sleep, and most of the time can barely function with that!

My husband thinks I couldn't handle it, that it's not just possible for me to care for a child. This makes me so sad, I am basically just trying to 'prove' to him I probably can (with help from family/friends/church) and am waiting for him to change his mind....