To those of you who chose not to have children after AVM

I was wondering if m/any of you have made a deliberate choice not to have children after brain injury & if so, was it an obvious decision or hard?

I do not plan on having children because any pressure, too much noise, not getting sufficient rest, has, in the past made me very ill. Stress has, in the past, consistently worsened my epilepsy to a point that my brain has beenpretty much obliterated for weeks at a time. And then, gradually, managed to knit itself back together.

I never want to go through that again and have to avoid anything that causes too much stress. I also get fatigued as it is. Does anyone get what i mean? I have friends who have children and they are often worn out without having a head injury to contend with!

If you have chosen not to have children, how have you adapted, as there seems to be an expectation in society that everyone will have children.

flower
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1 Like

Flower: I have not made a deliberate choice not to have children due to my AVM. I did not know I had an AVM but I did know that I had seizures of unknown cause and that I easily became very fatigued.
I was therefore naturally worried about how I was going to be able to go through pregnancies, childbirth and motherhood because of it. I did get more seizures during my pregnancies and had to learn how to listen to my body, to relax whenever i felt exhausted etc.
Since I do not know how it feels like having children without an AVM it is difficult to tell if my fatigue was more than “normal”. All I know is that I did manage to go through with three pregnancies, two homebirth and being a single mother part of the time.

Yes, it was very exhausting at times, I had to sleep whenever I could between breastfeeding, nappy change, delivering to and from school etc, (and doing my own homework, being a student at the time) but I did manage it somehow.
I guess it helped me when I got my seizures that I did not know about the AVM, since I am sure I would have worried much more if I had known about it and all the possible complications!
Possible it helped me to be young myself during the time when the children was very small.

Recently I have been much more tired and exhausted. Especially after I got my AVM diagnosis three years ago. Today I sometimes feel it is a challenge to be able to go through a whole ordinary day, getting up early in the morning, preparing my children to school, shopping for food, making supper, bedtimes stories, and definitely taking the children out for fun etc.

Having children means that you have to be a mother all the time, unless you have close family or a husband that understand you and can give you the support and rest you need, you have to always be around.
That is obviously something to consider if you chose to have children or not. I think it very important and mature to realize that having children demands a lot of energy and that maybe you do not have enough of it!

Some days, like today, I really do not know where to find the necessary energy, I just feel like sleeping and more sleep. Hopefully tomorrow, when my children come home from winter holliday, I will get my energy back. Somehow the energy always come back in a miraculous way :slight_smile:

If I could turn the time back, knowing what I know today…about my AVM, the risk of getting a hemorrhage, being paralyzed or even die young, I do not think I would have made a different choice, …but I am not sure…maybe I would?
It has been tough and a struggle when I could not explain the family why I could not come for a bicycle ride or long trips or simple things like cooking after a long day, because I then definitely would get a seizure or two…
Even so, it has all been worth it, I get so much back in return, I love my children.(I guess everyone with children would say that). I am lucky that my children seems to understand that I sometimes need extra rest, they are really supportive :slight_smile:
I hope that I will be around for many more years to come, to be able to follow my children through their lives as long as possible.
That is maybe what is worrying me and the children most. That this AVM one day will burst.

Flower, if you chose not to have children because you know that that will cause more stress, pressure, noise, fatigue, seizures etc I think it is a very good reason not to have children.
Do not worry about what the society expect but listen to your own intuition.
I am sure people will respect your choice and it is only you that know what is the best for you and therefore only you that can make the right choice!

Love Hanne xxx

I had 3 kids before my AVM (that I didn’t know I had) bled. To be honest, since the bleed the older 2 (age 10 and 7) have has to take on so much responsibility cleaning the house and taking care of the baby (17mos.). I feel very guilty, but they say they don’t mind…they’re just happy I’m alive.
If u feel you can’t give your kids everything they need, don’t have any. You have to live your own life for you, regardless of others’ exopectations. None of these people who are expecting you to have kids can even imagine what it’s like to live with an AVM. You have to do what’s best for you.

Thanks for posting this up. From the guys point of view I’m on both sides of this issue. I would like to have a family and raise some kids. On the other hand I think about how all the problems that I have on a weekly bases. If we have kids I will be the one that is staying home and taking care of them. I do not handel stress any were near as well since the TBI, AVM being found and then the Gamma knife. I do under stand were you are coming from. We joke a round that I will burn the house down with the kids in it because I was cooking lunch and for got about it. LOL We are planing on having kids at this point in 2-3 years and we will see how I’m doing at that point before we try.

Daniel A Sadler said:

Thanks for posting this up. From the guys point of view I’m on both sides of this issue. I would like to have a family and raise some kids. On the other hand I think about how all the problems that I have on a weekly bases. If we have kids I will be the one that is staying home and taking care of them. I do not handel stress any were near as well since the TBI, AVM being found and then the Gamma knife. I do under stand were you are coming from. We joke a round that I will burn the house down with the kids in it because I was cooking lunch and for got about it. LOL We are planing on having kids at this point in 2-3 years and we will see how I’m doing at that point before we try.

Sounds like a good idea to wait a few years to see how you are doing & how much you can manage. I know what you mean about burning the house down! To have kids it seems to me, that you have to be totally switched on and have eyes at the back of your head, 24/7.
flower
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This is such a great question. I worked full time (50 hours a week plus) and have one child with my husband, who is 4 years old. I had hoped to have a second, but the AVM I never knew i had bled this november and I just turned 40. All of my sisters have two kids, and live far from me, so i had kinda hoped on having two, i love my sibilings and wanted him to have that experience. But after 3 months after my stroke, I know in my heart i cannot have another child, I just got back to work and am barely keeping things together, im tired alot. My husband helps more now that he understands more and i have to have surgery in the next few months. Even if i was younger and even if surgery goes well, i think i would proably choose not to put my body though it again. But that is perhaps much easier for me to say because i have a son already that i adore. It is a tough question. But you need to put your heath and well-being first. If you feel like you have always wanted kids and cant imagine not being a mother and you have found a wonderful person who is willing to go above and beyond, then certainly you may be able to do it. but i’d say your health is the most important.

I am almost a year from my bleed (April) and I want to have my first child…but I am trying to wait until I am better. I will be 35 in July and was wanting to get pregnant before my AVM bled last year. My bleed was in my cerebellum so my balance is my biggest issue…trying to get better with that because I know being pregnant could make it worse…

Hanne said:

Flower: I have not made a deliberate choice not to have children due to my AVM. I did not know I had an AVM but I did know that I had seizures of unknown cause and that I easily became very fatigued.
I was therefore naturally worried about how I was going to be able to go through pregnancies, childbirth and motherhood because of it. I did get more seizures during my pregnancies and had to learn how to listen to my body, to relax whenever i felt exhausted etc.

Since I do not know how it feels like having children without an AVM it is difficult to tell if my fatigue was more than “normal”. All I know is that I did manage to go through with three pregnancies, two homebirth and being a single mother part of the time.



Yes, it was very exhausting at times, I had to sleep whenever I could between breastfeeding, nappy change, delivering to and from school etc, (and doing my own homework, being a student at the time) but I did manage it somehow.

I guess it helped me when I got my seizures that I did not know about the AVM, since I am sure I would have worried much more if I had known about it and all the possible complications!

Possible it helped me to be young myself during the time when the children was very small.



Recently I have been much more tired and exhausted. Especially after I got my AVM diagnosis three years ago. Today I sometimes feel it is a challenge to be able to go through a whole ordinary day, getting up early in the morning, preparing my children to school, shopping for food, making supper, bedtimes stories, and definitely taking the children out for fun etc.



Having children means that you have to be a mother all the time, unless you have close family or a husband that understand you and can give you the support and rest you need, you have to always be around.

That is obviously something to consider if you chose to have children or not. I think it very important and mature to realize that having children demands a lot of energy and that maybe you do not have enough of it!



Some days, like today, I really do not know where to find the necessary energy, I just feel like sleeping and more sleep. Hopefully tomorrow, when my children come home from winter holliday, I will get my energy back. Somehow the energy always come back in a miraculous way :slight_smile:



If I could turn the time back, knowing what I know today…about my AVM, the risk of getting a hemorrhage, being paralyzed or even die young, I do not think I would have made a different choice, …but I am not sure…maybe I would?

It has been tough and a struggle when I could not explain the family why I could not come for a bicycle ride or long trips or simple things like cooking after a long day, because I then definitely would get a seizure or two…

Even so, it has all been worth it, I get so much back in return, I love my children.(I guess everyone with children would say that). I am lucky that my children seems to understand that I sometimes need extra rest, they are really supportive :slight_smile:

I hope that I will be around for many more years to come, to be able to follow my children through their lives as long as possible.

That is maybe what is worrying me and the children most. That this AVM one day will burst.



Flower, if you chose not to have children because you know that that will cause more stress, pressure, noise, fatigue, seizures etc I think it is a very good reason not to have children.

Do not worry about what the society expect but listen to your own intuition.

I am sure people will respect your choice and it is only you that know what is the best for you and therefore only you that can make the right choice!


Love Hanne xxx

Hanne,

Thanks for taking the time to reply. I have been spending time with small children lately and really don’t think I could do it because of my fatigue. I started a small voluntary job and that made me think again about whether it is sensible to have kids (ie taking on something else/extra in my life which is already quite full with my home, friends, hobbies). I noticed that my concentration was going up and down, and I still make mistakes. I really don’t think I am switched on enough to cope with having children. It is amazing that you have coped with 3! Well done. I’ve made an apt to see the doc about sterilisation, and in, a way, it seems the sensible thing to do, as if I get overtired everything spirals out of control, including my mood and me!!! I’m also a bit past it, ie nearing 40.

flower
x

Flower, I actually had 2 children by the grace of god, my daughter was my last and It was a complete struggle. I had to be put on extra seizure meds. She now suffers from vision problems, due to all the medication I had to take. I am so ill now that I can’t even care for my children. There is alot to consider it was a hard road for me. The doctors even made sure I could not have anymore children. I for one could respect any decision you made, pregnancy is alot more difficult for us. There are also consequences after as well. As far as society I deal with it everyday case by case, explaining why I have children but they do not live with me. It’s tough, but It sounds like you might be better off, could you maybe adopt? Or, volunteer with child organizations. On your better days? I hope my experience has been helpful. Also, not everyone has children anymore, its just very common. Anyways I’m dragging on! Keep your chin up. God Bless. Sheila

Sheila Hillhouse said:

Flower, I actually had 2 children by the grace of god, my daughter was my last and It was a complete struggle. I had to be put on extra seizure meds. She now suffers from vision problems, due to all the medication I had to take. I am so ill now that I can’t even care for my children. There is alot to consider it was a hard road for me. The doctors even made sure I could not have anymore children. I for one could respect any decision you made, pregnancy is alot more difficult for us. There are also consequences after as well. As far as society I deal with it everyday case by case, explaining why I have children but they do not live with me. It’s tough, but It sounds like you might be better off, could you maybe adopt? Or, volunteer with child organizations. On your better days? I hope my experience has been helpful. Also, not everyone has children anymore, its just very common. Anyways I’m dragging on! Keep your chin up. God Bless. Sheila

Sheila,
Thanks for your reply which was interesting and brave in it’s honesty which I really respect. I spend time with friends children which has given me a good idea of what it is like, & how tired I get! I need time on my own, in quiet to re-energise, I guess you may be the same?
All the best,
flower
x

Wow, this is a great question! I did have a child, knowing that I had an AVM. I never had any seizures, so wasn't on any meds. I felt fine and was told by my neurosurgeon, to leave it alone, that the vessels in my AVM were large and strong, not like little spider vessels. So, I kept a very positive outlook and had a fine pregnancy, and an awesome baby girl. I did choose not to have a 2nd child.

I wasn't having the problems that you are. A baby in the house is alot of work and noise, esp the 1st couple years. But, the rewards of watching them grow are enormous. My daughter was never that much of a problem and, once she was old enough understood if I needed her to lower her voice.

I do know what you mean and I hate society for making you feel that motherhood is "expected". I have friends who have sometimes insinuated that I, and others who have only 1 child, have it easier, and it makes me so mad! If you're still young, give it a little time. Maybe these symptoms will diminish.

Listen to your body and your heart, and forget about society (I had to backspace here to erase what I really said, probably inappropriate)!