Would You/ Have You Started Having Children After Getting Sick?

[coloredblood]

I am 24 and have had POTS for about 4 years now. I am stating to think about long term life. I'm not sure if I can even have children (I have endometriosis) but I want to hear if anyone has decided to try to have kids after getting sick. I know some of you have had second and third children after being sick, but I really want to hear if anyone decided to have the first child sick. I would love to hear about your experience. I'm trying to gather information. I also want to know How do you raise young children when you are sick and symptomatic? Please share anything and everything!

[Frugalmama]

I sort-of fall into the category you're looking for . Although I didn't realize it at the time, I have been having major POTS symtpoms for as far back as I can remember. Technically I was just diagnosed with severe IBS and Chronic Fatigue Syndrome, but I was very limited in what I could do - I finished university by distance ed, never could handle working more than part-time, could never do two activities in a row, etc. i had my first child when I was 26, and it was during my second pregnancy that I became very disabled. In spite of that, we went on to have our third when I was 29. Would I do it again? In a heart beat! I require someone with me and the kids all the time since I can't handle them on my own (even with my wheelchair), so that needs to play into your consideration. Can you find help? The baby stage is hard because they need to be carried and snuggled and rocked....but then they are toddlers and into EVERYTHING! I find it's easier with my 3 and 4.5 year olds since they are more self-sufficient, but I still can't take them out of the house alone because I can't even help them to the bathroom.

The other thing I'd suggest considering is what your husband is like. Mine is amazing - supportive, loving, non-complaining. It's partly his very mellow personality, and I think partly a special grace the God has given him. But with our last baby, he's the one that was up to get the baby for feedings, rock him back to sleep, etc., and he does all of the cooking, laundry, and such plus is the go-to guy whenever he's home from work. It's a lot. And he's tired. But we're really thankful for our kids!

And if I may add, I also have the other perspective. My mom has had health problems since long before I was born, and that was just "normal" in our house. She has fibro, and I'm quite sure she also has a form of dysautonomia and possible MCAD - so she was very limited. But I don't begrudge her any of that, and neither does my sister. She loved us, cared for us, supported us and encouraged us! Yes, she missed outings and trips and we couldn't just have friends over whenever we wanted, but she's a fantastic mom from whom we've learned a lot - including about empathy for those dealing with illness. All this to say, as a mom I worry about the impact my illness will have on my kids, but I am quickly reminded that there's ways to be an amazing mom in spite of physical limitations.

Anyways, I don't know if any of that helps, but please feel free to ask if you have any questions!

[HopeSprings]

I was sick before deciding to have children. I didn't know what I had at the time - over 8 years ago. My husband and I had been married less than a year when we started talking about it. I always knew I wanted a family and it came down to, am I going to let this sickness dictate my entire life? Am I going to give up lifelong dreams because of this? Plus I didn't know how long this would last. What if we decided against it and one day I was better and we missed out on the most amazing experience a person can have? I had my limitations, but wasn't totally disabled. We just decided to go for it and take things one day at a time. Pregnancy was awful and the baby/toddler years were tough, but I did my best. I forced myself to do a lot of things with/for my son that I would never have done on my own. He was good motivation to get out there and participate in the world. I think a lot depends on your level of disability. I have my up and down days, but mostly have been able to push through the bad days and do it anyway.

4 years later we had the talk again and decided to try to have just one more. My daughter was born and again, pregnancy was awful, particularly while having to care for a 4 year old at the same time. There are a lot things I can't do and I've felt sad or guilty at times, but they seem perfectly happy and well adjusted. I've never sensed that they feel they've missed out on anything. It's been difficult, but honestly they've given my life purpose. I think the last 8 years would have basically been spent on the couch and at Dr. visits. They are truly little sprinkles of joy in an otherwise miserable situation. I think the most important thing is having support. My husband is a very good, very involved father. Help from family and friends is always good.

I don't want to sugar coat this, however. Children are a huge commitment and a lot of work. It took me an hour to write this post, as I went back and forth between writing this and reading books to my daughter, playing hide and seek, getting milk, snacks, putting her on the potty etc. Their needs come first and sometimes it's hard when all you wanna do is lay down! It's a personal decision. You might decide to focus on getting better first or decide, like me, that you don't want to wait around waiting to feel better. Good luck wherever life takes you.

[aunie]

I actually got POTS a few weeks after my second child was born. I was so terribly sick and I also had a four year old to take care of too. They both gave me the strength to get through the days, gave my life purpose and I would never take it back. I feel fairly certain I would for sure try to be a parent, even with this illness, I just got lucky to be pregnant before POTS. Although I do admit it is very hard. Getting through those baby years with my daughter were at times pretty scary. I look back now and I really don't know how I did it. Thankfully I was blessed with a happy baby, who was content to sit with mommy and not run around much. I also breastfed her, which I think is wonderful, but if I had to do it again I think I would have bottle fed, that way more people can do feedings ( she would not take a bottle ever!) I agree with the others, I think if you have an amazing husband and help, that children are a wonderful blessing and truly enrich our lives. My husband also does the majority of cleaning and he run's the kids to their appointments, he play's the cheerleader mommy role at competitions and does his best to care for me too. He is amazing and without him, our family life, the quality of it, would simply not be what it is.

I want to say Thanks to Frugalmama. Thanks for sharing a tidbit about your childhood. I at times feel sad or guilty, wondering if I am taking something important away from my kids. I always try to remind myself that even though I may miss out on going to things and can't be the crazy super mom, I still love them, more than anything and I always do my best for them in all the ways I can. We will create and have created our own sort of normal.

[icesktr189]

I was diagnosed with pots at 18 and had my first at 20. the pregnancy was not bad until my third trimester.... however, my pots was a lot more under control. after my pregnancy, I did okay for about 6 months and then went downhill fast. I am now bed/couch bound and my family helps out a ton. make sure that if you decide to have kids, you prepare for the worst. however, I know a lot of people who just went back to their pre pots phasr. just know that it is sooooo much work being a mom. good luck! and sorry if this made no sense I am writing off my phone

[RunningWild]

I think about this a lot, because I am only 22 and wanting to have children someday. I guess Dani said it best where if we choose to have children, we will have to prepare for the worst (and hope for the best), but I think that's how I go about living on a daily basis. haha.

[kmichaelson]

I don't have any advice, because I'm in a similar boat, but I just wanted to thank you for asking this question! I also have endo and POTS, but I'm 34 and know that I don't have forever to decide what I want to do so I've been asking myself this exact question for a long time now!

Thanks to everyone for their wonderful insight, and, Frugalmama, thank you for giving me your perspective as a child of a mother who had health concerns. I think I worry sometimes that I won't be the 'ideal' mother in my condition right now, but you're so right that just having a loving, caring parent is by far the most important thing. Not every mother can do everything, and the most important things a mother does are not the physical ones.

[MomtoGiuliana]

I agree that if you plan to have a child or children that you also review your support network.

I was very sick during my first pregnancy, with POTS and had to leave work at 7 months (my daughter was born at 40 wks c-section due to complications w high blood pressure and other problems). No POTS diagnosis, which might have helped. I was very disabled post partum. I breastfed and did very little else for much of the first 4 months. Fortunately my mother was able to live with us for 3 months+.

Went back to work when my daughter was 10 months old.

In my case, my husband does not make sufficient income, nor does he have access to health insurance, that I could risk getting that sick again. Furthermore after he had a heart attack 4 yrs ago I felt our situation was too fragile to bring another child into the family. I think it is great that others have been able to live their dream regarding creating a family, despite health challenges, but it is not possible, or the best choice, for everyone. In my case, the best decision for my family was not to have another child. (I realize people have kids and rely on govt financial assistance but I was, personally, not willing to risk having to do that either).

Unfortunately there are so many unknowns with POTS--will I relapse again, how bad will it be, can I work in the future, etc. So with the unknowns, I guess bottom line is that you need to review what assistance is available to you, what assistance you are comfortable accepting, what level of vulnerability you are willing to accept, along with what your goals are for a family.

[icesktr189]

Oh both of my cardiologists told me that if you are 100 percent you want children, to have them early. Its not going to be any easier on your body as you age. I was 20 when I gave birth and it was still very hard physically... I couldnt imagine doing it at 30 plus!

[MomtoGiuliana]

Good point!

For all women this is good advice for any number of reasons.

Unfortunately not everyone is ready emotionally/mentally for children in their 20's. Or has found a partner yet. The economy right now is not making financial stability easy for many couples/families either and people are delaying having children for this reason.

http://www.guttmacher.org/pubs/RecessionFP.pdf

[mwise]

I wasn't diagnosed til later on with Dysautonomia, but I will tell you I have Endometreosis and had identical twin daughters at the age of 40 without fertility drugs or any treatment. As with others on here, having children are a big responsibilty and you need to know what you are capable of handling including having a good support system. I am so blessed to have them especially with having Dysautonomia because they are such a joy, help and give alot of unconditional love to me. A Hug & Good luck with what ever you decide to do

[icesktr189]

momtoguiliana- Oh I am definently talking about physically, not mentally LOL. That is very true that most in their early 20's are not ready for children, but I just could not imagine going through all that later in life when I have even less energy! I am very lucky to have such a supportive man or else I have no clue what I would do. I am contemplating having another in a couple years but not sure just yet. Its such a gamble on your health, but it is so worth it.

[abnel]

mwise, thanks for much for sharing and congratulation too by the way! Did you have Dysautonomia and were you symptomatic before you had kids at age 40?

I am in my late 30s and POTS hit me shortly after I got married to my husband. We both want kids but not sure if it is possible now (the usual fertility issues might be creeping in). Plus my POTS is not abating with time unfortunately.

Such a hard decision to have to make...

[lissy]

I have 5 children, Symptoms began prior to having children and got worse with every pregnancy. If I would have know what was wrong with me before having children I may have not decided to have children.90%

My doctors tell me now its absolutely dangerous for my heart to attempt to have another baby, not that I want anymore...but with the last delivery my heart was only 40% EF and I have been severely ill ever since.( will be 4 years in March)

I guess its all about what your wiling to risk or chance. It could be perfectly fine...or not, only God knows.

I feel guilty about all the normal things I'd like to do with my children and cannot.

I worry all the time if they will also get this later in life.

I have constant anxiety with the fear of dying and them being without a mother.

The responsibility of being a parent never changes no matter how bad or sick you feel so depending on your individual situation let that determine your choice.

I wish you the best in whatever you decide and pray for comfort in your choice.

[yogini]

Personally I would have one and see how it goes. I think there is a risk of getting worse, but my POTS is mild. In general the research shows that women with POTS do well with having kids and almost all of the people here who have been pregnant have given good reports. I think Dr. grubb wrote a paper on this recently. I do think a support network is important, but on the other hand I also think you (and hopefully your partner) have to prepared to do most of it physically and financially on your own. Again, a person does what they are able. I know my parents gave everything to raise us, and I see them doing more than thy should have for my healthy sister's kids. I know Iit is hard on them at this age and I wouldn't want to put them through that. If you know before going in that you probably cant, then maybe you shouldn't. Most of us i think would be OK. I would make sure to have good health insurance and also look into genetic issues to make sure you are not passing POTS on genetically. But ultimately none of this would stop me from trying to have at least one.

I think you have a lot of time to decide if you are 24! You may even recover from POTS even if it doesnt seem like it right now. There are also other options, adoption, foster kids, step kids, who knows what life will bring! I am psyching myself up by writing this!

[janiedelite]

Ours is a long story, but we had the joy of being foster parents to several different kiddos. I can't work, so I was the primary caretaker. Our state knew of my diagnoses and my doctor had to write a letter saying what ages of kids I could manage, how many, and any restrictions. We ended up fostering a busy 2 year-old for about 15 months, and we had several infants each for just a couple weeks' time.

Foster parenting was a great choice for us because I was able to really see what I was capable of doing as a parent, and we were able to help these precious kiddos by giving them a loving home.

Parenting with POTS is challenging but possible (depending on your symptoms). There are lots of past threads on this topic where members give tips on how to parent around our dysautonomia symptoms.

We are now in the process of adopting privately, but will probably do more foster parenting in the future (and adopt through foster care if possible).

However, I do think it is best to "hope for the best but prepare for the worst." I have support available through friends and relatives who have made themselves available to help if needed, so I felt comfortable testing my limits by becoming a foster parent.

[Frugalmama]

One other thing I forgot to mention - depending on your symptoms, it may be difficult to adopt or foster. I'm pretty sure that in the state I'm currently in, there's no way we'd pass the medical requirement. Just something to consider

I totally agree with the others that mentioned that their kids bring them joy! There's the perfect moments when my kids pile into bed and snuggle me and sing me songs - it's one of the few moments that I can completely forget that I'm sick, and that in and of itself is a beautiful gift

[coloredblood]

Thank you SO very much for all of your stories, comments, and advise. You have giving me a lot more to think about and make me feel inspired. Keep it coming! It's the biggest decision I've ever thought about.

[abnel]

Thankful, that's wonderful news that you are adopting.

I had a question for you and all those other parents out there.. How did you go about broaching the subject of needing some support from friends and family with raising a child?

I wouldn't know how to broach this subject. My friends may be able to help in an emergency, but being bedridden and needing help on a daily basis is another thing. I doubt many people would come to my aid on such a constant basis.

[jackiemxoxo]

I am glad you asked this question because it is one I have been wondering about myself. I am 27 and my husband and I have been talking about having kids for the last couple of months. I have been really worried about the risks with pots and pregnancy. My doctor said I should be fine but I still sometimes question if he really knows about my sickness. We plan to start trying next year and have even taken into consideration the seasons and trying not to be pregnant during very hot months. I am also doing my master's online so it will def be a challenge so we will see how that goes. Good luck on your decisions.

[janiedelite]

We're fortunate that my folks live a mile down the road and are retired. We talked with them prior to trying to get pregnant and the risk that I could worsen symptomatically and may need regular assistance. My hubby and I also talked about hiring help in case I worsened. However, we haven't been able to get pregnant. We again talked with them and with my hubby's mom prior to fostering and they were incredibly supportive again. We wouldn't have been able to attempt getting pregnant or fostering without this level of support.

Frugalmama, you're so right about the state or adoption agencies being restrictive based on the future parents' health. For example, if I had uncontrolled syncope I doubt we would have been approved to foster or adopt. You have to be able to monitor the child in your care at all times.

[icesktr189]

I had my dad and brother move in with me. Before that I lived with my MIL and she works at home so I always had someone with me at all times

[handmadebyemy]

I'm 26 - I've had POTS since I was 21, been married for 4 years, and we have decided not to have kids, mainly due to my health. Maybe in the future if my health improves and my POTS symptoms go away we would think about it, but at this point I don't think its fair to the child to choose to get pregnant now. I would have difficulty raising children and I know that I couldn't be the mom I'd want to be. One of the hardest things about this illness for me is the effect that it has on my husband, so I couldn't imagine the guilt I would feel as a mother.

[kmichaelson]

I'm 26 - I've had POTS since I was 21, been married for 4 years, and we have decided not to have kids, mainly due to my health. Maybe in the future if my health improves and my POTS symptoms go away we would think about it, but at this point I don't think its fair to the child to choose to get pregnant now. I would have difficulty raising children and I know that I couldn't be the mom I'd want to be. One of the hardest things about this illness for me is the effect that it has on my husband, so I couldn't imagine the guilt I would feel as a mother.

I'm similar in that I feel very guilty about my husband having to do so much more now that I'm sick. He's wonderful and doesn't complain, but obviously it adds to his stress. I think that's a big fear of mine if we were to have kids that I wouldn't be able to do as much as I'd like and it would just add even more to his stress.