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AVM Survivors Network

A worried parent. Please read x


#1

I’ve just joined this group today. I don’t even know where to start!! Here goes -
I have a daughter - Mia, recently turned 5! When I was pregnant at age 19 I found out she had a rare condition ‘combined venous cystic lymphatic malformation’ it’s weighed nearly as much as she did & was on the left side of her face/neck. A large growth, feeding off her blood! When born the EXIT procedure was preformed via csection to safely deliver her by ventilating before cutting the cord due to the malformation pushing on her airways. She went straight to intensive care, at 6 days old 80% of the growth got removed. She recovered well & with her having lots of MRI scans an AVM was sported. . I did get told about this but not in much detail as the greater condition for Mia was the growth, over the years Mia has been admitted to hospital plenty of times for infections & bleeds due to the growth. November 2016 we had been home from Disney land Paris for 12 hours when Mia woke in the night (1am) screaming in pain, she then was vomiting and very lethargic. My first thought was a bug and I was questioning weather to see how she went through the night, however gut instinct told me to get her checked so I rang the 111 service who sent rapid response out. As she was 4 at the time any under 5 has to be taken to hospital once an ambulance has been called by law! Luckily. Mia got taken to local hospital after a few hours they was ready to transfer her to the local children’s hospital that she is under as the neuro surgeons know how rare she is, doctors from the first hospital called them and got told to take her there. As they checked her before transferring they noticed her left pupil had gone big. Immediate ventilation & blue lighted to alder hey hospital where our neurosurgeons was waiting in intensive care for her. The next few hours was a blur. She got set up in there went for scans etc. Docs came to see us and told us her AVM had ruptured and caused a subdural heamhorrage. Due to mias other condition they cannot operate, the only option was to medically induce her into a coma & hope she fixes herself. Over the next 11 days there was plenty of bumps & hurdles. Scans showing her sight had been effected in her brain, Mia had an ICP probe inserted into her brain to monitor brain pressure, when she woke up she was completely fine apart from needing physio… she was so weak but everything to do with her brain was fine. Even her sight! She had short term memory loss & I’m noticing now she forgets things quickly. Morphine had turned her evil towards docs and nurses so she wouldn’t tolerate physio, a month later physio decided she would benefit better at home with us doing the physio with her. We got her stronger and she went back to school after the Christmas holidays! Myself and the surgeons cannot belive how well she recovered. Now she’s the same child! The surgeons say to me all the time they don’t know how she got through it!! She’s a fighter. However, me, I am a nervous wreck. All the time! I can’t sleep proper, I think about the AVM all the time. When is it going to happen again? What will the outcome be? I know I shouldn’t think like this but I’m finding myself struggling. When the heamhorrage happened I was 7 months pregnant - we now have a healthy 12 week old boy! Mia adores him. I try stay strong for them, I don’t show it in front of them but I break down a lot. How do you parents cope?! What do you do to avoid it happening again? What foods to eat etc?! Mias AVM isn’t on her brain, but close! I don’t even know much about it!! I’m trying to get an app with surgeons after the bank holiday to find more information but last time I asked they said there’s not much they can say as Mia is a really rare one cause of her other condition! I’m just heartbroke and just hoping this network makes me feel better. Talking to other parents! Sorry for the long long post!!! But thank you so much if you have read it, Kayla x


#2

Kayla,

Wow. You’ve been through a lot. To know that she’s the same girl is just fantastic. I’m not a parent of or caregiver but I know it is extra stressful when the AVM affects someone you love, so we created this group for parents and caregivers quite recently.

I’m sure others will pitch in to support but meanwhile I’d like to welcome you to the site. How long ago did you go through all this?

The warmest welcome,

Richard


#3

Thank you Richard, falling pregnant at 19 I did not expect my life to be
the way it is now. She’s worth the worry and stress however! Her avm
rupture happened 18th November 2016! She came home from hospital on the
18th December 2016. She turned 5 two weeks ago. The website seems amazing.
Hoping I get responses x


#4

Ok. That’s pretty recent. I tend to think of “discovery” as quite a rollercoaster and you’ve done a lot more than “discovery” already.

I’m also quite sure that she’ll get into other scrapes as she goes through life, too. Time is a great healer. I hope that you’ll get to the point where you’re worrying about “normal” stuff again / more than the AVM… first day at school she’s done but having friends, falling out with friends, later boyfriends, falling out with boyfriends… all the usual things. At some point you’ll find yourself thinking about those. I’d say that will be success.


#5

I do hope so, I think it was more of a shock to be honest cause I remember
them mentioning the AVM but they didn’t give it much talking about so for
this to happen I’m in total shock! Thank you so much for your response


#6

Kayla, its great you’re here and holy smokes that a lot in a short period of time! In an odd way I’m lucky to have the AVM in my house, I can’t imagine how much more difficult it would have been had it been one of my children. When mine ruptured last May my kids were 10 and 12. I hope you find this site really helpful, some incredible people here who have dealt with these creatures either as a patient, caregiver and parent. All the best, and stay strong. Sounds like you sure have a fighter there!


#7

Thank you, she definitely is a fighter! Horrible things these AVMS are.
It’s very difficult knowing my child has one its just scary thinking it
could rupture whenever it wants… I asked the surgeons if I should avoid
things and they told me no, don’t limit what she can do but I feel some
things like fair rides etc, would they not be dangerous? Thank you for your
response


#8

Hello Kayla,
You and Mia have a real time of it! I appreciate that’s an understatement, have you considered getting a second opinion? I cannot recommend UCLH in London enough- I appreciate that you are some distance from them, but they are a receiving hospital and will take cases from anywhere in the country or at least this is what I have been given to understand, they are also next door to Great Ormond Street. The Neurosurgery and Neurological teams are amazing and the after care was brilliant. I had a craniotomy there in June 2015. Having a name is good- I will find a link to the UCLH website- I had to be quite persistent in shifting my care but I am so glad I did- link to follow,
Laura


#9

https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/Pages/Home.https://

www.uclh.nhs.uk/Search/Pages/SearchResults.aspx?k=Paediatric%20Neurosurgery

I did a search for Paediatric Neurosurgery at NNH and UCLH, have a look and see what you think.


#10

Thank you for your response, I haven’t ever thought of it in great detail
to be honest as I trust alder hey surgeons so much and I’d panic incase
something went wrong if she went elsewhere and I’d feel it’s my fault. I
suppose it’s worth mentioning to her surgeons, I’m just so frightened il
one day loose her! I can’t fault any of the surgeons Mia is under, she’s
under around 13 departments, they’re fab! I will surely speak to them
though,and see what the think,thank you x