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AVM Survivors Network

Decision on children...Still have AVM

#1

Hi all,

So I was looking to get input on a touchy but important subject in most people’s lives! My son is 11 yrs old and since he was 2 my AVM was found and my husband and I were told I couldnt have another child until the AVM was gone. Well I still have the AVM, but I got a new dr and he said it’s ok for me to get pregnant. Now we are confused and wondering if we are ready and willing to start over. Is my health and such worth it or should we wait and see if the AVM is gone in October 2017. It’s probably the toughest descion we have ever had to make.

I’m 95% ready to jump in and go for it. My husband. Won’t give me a straight answer. I really just want to know if any of you have or are in this boat and what or how are you dealing with this??

Thanks for any tips and suggestions!!

Andrea

#2

I was told I should not have kids till my avm is gone. There is a risk involved. Its not just with the labor part of the pregnancy- he said. I thought I could get a c section. He said the entire act of being pregnant could cause a problem in the blood vessels in my head. I still am so afraid to risk anything happening to me. I am 32 and hope I can have a child one day.

#3

I have come across this question before. I had my two boys with an active avm back in 87/90 by Csection. I had a bleed 8 years before. My only warning from drs was for blood pressure during pregnancy and delivery which i was monitored for. I was admitted for bedrest with the first when my bp went up but 2nd was normal pregnancy. Both were born by c section. I suppose they may have been less cautious then. Maybe i was rash looking back. But i have two lovely sons. I wd be more concerned about taking anticonvulsants when pregnant. My 2nd son is autistic which could be related to tegretol. But you could wait i suppose. I hope my experience is some help even though it is sometime ago. Good luck with what ever choice you make

#4

Hi! I have an AVM that was just diagnosed. However, when I had my youngest son two years ago, I encountered multiple issues with the pregnancy which I believe were due in part to the AVM. I developed a large hematoma (an SCH) on the placenta, which resulted in a tremendous amount of bleeding and scariness from weeks 9-14 in the pregnancy. Once that “resolved” (it really never did- it damaged a large portion of the placenta), I developed blood pressure issues both personally and within the blood vessels delivering nutrients to the baby. Because of the issues, the baby ended up growth restricted due to the lack of nutrients received and ultimately the blood flow to the placenta was reversing. I needed an emergency c-section at 30 weeks and my baby was born at 2 lbs. He spent 8 weeks or so weeks in the NICU and now he’s a healthy (albeit extremely small) little toddler. :slight_smile:

Had I known then what I know now, I would have opted for treatment of my AVM first before trying for a baby. But I have a peripheral AVM so the treatment and risks are likely different from yours. But then again, I would never go back in time and give up my precious little guy. I can understand why it’s the hardest decision ever.

As far as tips, I would say just make sure that both you and your husband, your AVM physical and OBG (and maybe even go see a high risk OBG) are onboard with this and ensure you understand potential risks to yourself and the baby. It’s ultimately you that has to be comfortable with your decision though.

Good luck with everything!!

#5

I had my 2 children before AVM was found--but it was there!

#6

I had twins (C-section) before I knew about my AVM, and had no problems. But I must admit that one of my greatest fears now, when I know about the AVM, is to have a stroke and not be able to do the things I used to (or die) and having the kids live with the worries that brings. They are nine years old now :slight_smile:

#7

Hi Andrea ,
This is only a decision yourself , your husband should make based on your situation , however I will tell you that I was born with a avm and it wasn’t until I had my 1 and only pregnancy did I realise how extensive it had become .
I had my beautiful son through c section and was told promptly that I could never have a pregnancy again . At the age of 22 this was hard to digest .
What I do know is that hormones makes avms grow hence if you get pregnant with an avm it will grow while you are pregnant as that is what happened to me .
I think you need to get some specialist advice before you can make the decision so you can go into it eyes wide open . I hope this helps in some way . Lis

#8

Andrea,
Deciding whether or not to get pregnant (whether it’s the first time or not) when you have an AVM or AVMs is tricky, but I think it really depends on everyone’s situation individually. If your doctor days it’s okay then it’s probably going to have to be a personal decision you make. But before you jump in, make sure you weigh the risks and benefits. For some women with AVMs, becoming pregnant may be okay as long as they’re monitored. It all depends on the severity of the AVM or AVMs as well. In my case, for example, children are not an option. I am an HHT sufferer and I have AVMs scattered throughout my lungs, some of which have caused me a great deal of issues (I was diagnosed with mild pulmonary hypertension two years ago, so that already makes pregnancy out of the question for me since PH is a progressive disease). Though there are women with HHT and/or AVMs who can and do become pregnant without issue, they just have to be monitored. So like I said it depends on everyone’s individual case. I wish you the best and I hope you and your husband are able decide the right decision for you.

Best wishes,
Steph

#9

In today's world, I'd honestly opt for a surrogate uterus. Genetically our child. Pregnancies really worsened my AVM. My progesterone levels were off the charts for first 20 wks of pregnancy. So I vomited, had nosebleeds and my VM became huge.

#10

Andrea
My avm is in my right temporal lobe quite big, I have had 5 successful pregnancies all natural births and children all healthy, but I did not know about my avm during this time. I had no issues during my pregnancies no morning sickness, I’m one of the lucky ones I suppose,so you can have an avm and successful pregnancy. Although if I did know about my avm before having children I’m not sure wether I would of had so many, always best to get medical advice first.

#11

This is a true story, from last week. A woman with 7 children was scheduling ENT surgery for removal of a large AVM outside the skull, but on her head. There is extra bleeding in vessels (arteries) going against gravity to head; in general. An ENT is doing the surgery which includes debulking the large area. I later found that It is excellent to have an ENT surgeon do related AVM surgery, as long as the physician has experience with AVMs. This is a practice in Newark, NJ; home of Rutgers Medical School/UMDNJ.

The ENT insisted that the woman complete her family, undergo tubal ligation (sterilization) before embarking on this surgery. "Otherwise, another pregnancy would undo all the work I will be doing." The woman immediately agreed to the tubal ligation; then she will schedule the AVM surgery.

It almost seemed like an ethical situation; but it was in this patient's best interest. Perhaps 12 hrs of surgery would be undone.

Now, this is just one story. An unusual, heavy AVM. It was the woman's choice if she wanted more children. She did not.

#12

Hi, I had my son and had no problems with my pregnancy or birth,but I was unaware I had an avm until it burst when he was two years old.I did wait until my avm had been treated and declared all clear until I had my second child

#13

Thanks for sharing. I had my two girls in 1984 and 1990; the dark ages. I did go out on disability for both entire pregnancies. I asked the OBs myself; they weren't thinking of it. But gravity made my leg VM expand.

It seems most of these posts are @ intra-cranial bleeds? Such diverse stories; there can be no consensus built. But I appreciate that Andrea Fisher started the thread.

My first OB was clueless @ the VM being at the ourside of the birth canal. A vascular surgeon was called in and I could see in his eyes that this was high risk for me. The VM was the size of a grapefruit, usually a prune. If it involved arteries, it might have burst. The OB had no clue it was only veins. He should have referred me to a high risk practice; if such a thing existed. Before my use of the Internet, I was at the mercy of the MDs. My second child was borne via a C-section. The choice was made by me. C-sections are like D&Cs; the products of conception are all cleaned out very well. No bleeding. With #1 I had hemorrhaging. Needed blood but-guess what-there was no HIV testing done back then. I sould like an episode of "Little House on the Prairie." My point is just I had no way to navigate. I like to feel like the MD and I are captains of the ship (Rosen gives me that feeling); I was really flailing the nite of first birth. I was so anemic that I slept the first 5 days after birth. There should be a plan with "no surprises". I probably ruptured a blood vessel in my uterus that nite. Tho the underside of the placenta was very flat; which is a good sign there will not be excessive bleeding.

#14

I think it depends highly on your AVM... location, size, and how "delicate" it is. I had my son with my active AVM in my frontal lobe. We discussed the options with both my neuro and my OB beforehand. My neuro was largely unconcerned as my AVM was stable and not too large. My OB suggested, as a safety precaution, an assisted delivery to minimize blood pressure spikes that come from labor and pushing. I was also switched to a medication that was less likely to effect the pregnancy than the one I was on. When all was said and done, my docs monitored the pregnancy closer than normal and I did plan for an assisted delivery... ended up with a c-section for reasons unrelated.
I would say if you're receiving conflicting opinions, maybe get a 3rd opinion as a tie breaker to put everyone's minds at ease. Get the opinion of your OB too as they have likely seen many things.

#15

Victoria; I am so happy to hear that your "little guy" is a thriving toddler! My #1 daughter survived the awful uterine environment I provided. She has severe anger and anxiety issues.Lies that ruin my reputation. I read @ the field of "Pre-natal Psychiatry". SOunds like quackery; but it is a peer-reviewed medical journal. Anyway, some say that my first baby lived a "fight or flight existence" for those 9 months. She was struggling to survive. Some nites her heartbeat was so low that we prepared outselves for the worst. A pre-natal psychiatrist would say that she has a form of PTSD which accounts for her anger/anxiety now! Also a lot of lying where she portrays herself as a victim, usually as a reaction to me. Shrinks say she is looking for affirmation of her lousy feelings. She truly believes those stories for a while. Right now my "baby girl #1" is 32, very happy as a mommy of two. She should never have been born naturally; OB was afraid to do C-section for fear of what he might find in there. He guessed that there would be AVMs. With those placental broblems, you might be feeling very blessed that he is doing well. I wish you all the best!

#16

When we are pregnant we have hormone changes (progesterone) that maintain the pregnancy. Less risk of miscarriage when progesterone level is high. Tho it causes side effects such as tendency to bleed in other parts of the body. I was always getting nosebleeds when I was pregnant withn my second.Nothing to do with AVM; just hormones of pregnancy. Also I had bruises over slight bumps I could not remember.

Also, we have 150% blood supply during second half of pregnancy. So that is another factor.

Some doctors give different advice based on the location and size of the Avm. I suggest asking for the advice of an expert on OB and AVMs.

#17

I have had one pregnancy which was high risk and at that stage I did not know the extent of my avm , I just made it through the c- section and was told I was never to have anymore children . AVMs feed of hormones so you are at more of a risk of serious problems during pregnancy . I must say though my avm is in my pelvis , buttock and other areas so that could make a difference.
I really wish you all the best X

#18

That’s basically what I was told as well by my 1st avm. I’m pretty much holding off till my avm is gone, guess what it’s still here! Possible 4th gamma knife procedure in the works for this fall. I refuse to wait till next summer in the hopes it’s gone in the 4th yr since my last gamma knife

#19

I didn’t know the first time I was pregnant but I had some issues. No idea if they were avm related or not. But now I have to figure in seizures headaches low platelet count. It’s nuts so I’m going to wait until the avm is gone and hope that the other things calm down lol. But at least there wont be a time bomb in my head anymore!