Hello im Hayley, I have 3 boys callum 10 jack 4 and baby Jacob who is 5 weeks old. We found out on the 28th july 2011 that our baby had AVM and that it was bleeding , he had an emergency craniotmy to remove the blood clot. He was discharged a week ago and we have to go back in 3 weeks for a mri scan and angiogram. Iam absoloutly petrified of it bleeding again.i cant explain how how much i burst with joy when i look at him, but im so scared to pick him up and wont let anyone touch him. i feel i cant give him the big hugs like i used too before we found out incase it bleeds again. Am i crazy to feel like this? I cant believe how brave he has been and what he has gone through at such a young age.i cant sleep at night as i lay awake watching him incase something happens. i just want this to be over so we can move on but i nkow this will take time. thanks for listening
Hi Hayley. I’m Erin. I’m glad you found us here. I know how you are feeling and I promise you that you are not alone. My son’s AVM was found when he was 3 months old. I felt the same way you are feeling. Please hold and love on Jacob all you want. You WON’T hurt him doing that. Heck, I climbed right in my David’s crib at the hospital and cuddled with him,much to the disapproval of the nurses. There’s nothing I can say to stop your worrying. I still worry. I stayed awake for days just watching too. Try to sleep when someone else can be awake to watch him for you.
An MRI and angiogram will be easier to handle. Deciding on a treatment plan will be tough. There are many ways to go. Get as many different opinions as you need until you are ‘comfortable’ with the plan. As crazy as this may sound, I think it’s easier dealing with babies than older kids. There is no ‘new normal’, it just is always normal. My David doesn’t butt heads with me over anything that he shouldn’t do,because he’s never been allowed to do it.
I’m sorry to say but it won’t be over and done with. I think that it traumatizes the parents more than the babies. But you will move on,I promise! Nine years later,I still want to wrap him up in bubble wrap and keep him with me always. Just remember to breathe and take it one day at a time. You will be in my prayers.
Hi hayley, erin is right the worry is worse for the parents although you do learn how to deal with it a little better over time.My daughter was 17 when we found out she had had a bleed from an avm we now know she has multiple avms and cannot be treated because of the risk involved because they are in a bad position a chunk of one of them in her brainstem. All i can say is stay strong and positive and keep in touch with people on the site it helps alot even if you just want to let of steam with people who understand. Sarah (rebekahs mum )
Thankyou Ladies, i feel a bit better today , i have been hugging him like crazy! he is such a happy little chap!
Hayley, we did not know jamie had an avm until she was 30years old , she has led an ordinary life, had 2 beautiful children supposedly, it had been inside her head all her life, she says she always had headaches, she even blames her behaviors on the position the avm was located, post surgery, she,s great i can’t even imagine how much different our lives would have been had we known sooner, good thoughts may god hold you and jacob through this.
What a cutie pie!
Erin’s right – you won’t hurt him or make his AVM bleed by hugging him. When my son’s AVM ruptured and I joined this site, I conducted an informal survey on here to see if there’s anything we can do as parents to prevent a bleed. I asked what everyone was doing in the minutes that led up to the hemorrhage, and I got answers that ranged from sleeping to brushing teeth to arguing with a spouse to bike riding. (My son was eating a Frosty from Wendy’s at the time.) That told me that if it’s gonna bleed, it will. It gave me some measure of comfort to know that he couldn’t do anything to specifically make it bleed, but it also gave me more cause to worry because I discovered that it’s like a ticking time bomb that can explode at any given moment.
So don’t be afraid to cuddle him or hug him or give him all the love you want to. That was one thing that I DIDN’T get as an answer to my survey.
I feel the same way. Lilli has never had a bleed and the clot she did get they just let it do its own thing and pass. I haven't slept in months because I have been too worried about the what if at night. It's still hard for me to "share" her and I don't let anyone babysit, I just started to let her dad be home alone with her 2 weeks ago because I had to go to work. (she is almost 4 months now) I can't wait for the day we can really start to move past this, or at least get the ball rolling in that direction. Keep your head up!
Hi Hayley - I'm so sorry to hear about your beautiful baby boy. My son had the same happen, but my baby is 26. No, your not crazy to feel like that. When this happened to my son, I was also afraid to hug him, afraid to touch him anywhere near his head for fear I would hurt him. They removed a portion of his skull and will replace it in mid October. I wish I could just put him in a bubble until this is all over. I sat by his bedside, not eating, not sleeping, for the first 72 hours for fear that if I left something would happen to him, so I understand your fear and anxiety. It's a terrifying feeling to see your child go through this at any age, but especially since your son is so young. I had to drive him from the hospital to the inpatient rehab - I thought I was going to have a panic attack - I think I didn't do more than 30 miles an hour the entire way. So no, you are not crazy - the more information you get from this site and your doctor's about AVMs the more comfortable your going to feel. Give your baby hugs, hold him, touch him and love him because no matter what the age - 5 weeks or 26 years - they need that from their mother now more than ever. I will send prayers your way!