Baby with VGM

Hi Everyone, Im new to the group, we found out when i was 36 weeks pregnant that our baby has VGM, we were absolutly terrified, she made it through the birth and was doing well, up until a few days ago, she has gone into cardiac failure and her lungs are under tremedous strain, she will be having her first operation to embolize it on Tuesday. We are so worried as she is only 4kg, anyone else gone through this?

I am so sorry to hear about your baby. I have not gone through this. My son has had an AVM of the face and neck since birth. He is 13 now. It has been a long journey. His was very rare and has threatened his life. Recently he had a true aneurysm develop on his internal carotid artery. It took 8 weeks to diagnose what was causing him to have double vision, and excrutiating pain in his eye. Also, vomiting and proptosis. Anyway, we travel from Richmond, VA to Little Rock, Ar to see his doctors ( who were the ones who diagnosed this ). Docs in VA had no clue. They treated the aneurysm successfully and while I was there again, we talked about how they treat Vein of Geilen as where so many doctors cannot. I am not sure where you are being treated, but the doctor’s name is Dr. Eren Erdem, Interventional Radiologist who works with our doctor, Dr. James Suen. They are, in my opinion, THE BEST! World renowned in this field. They have saved my son’s life countless times and treat him when nobody else! I will pray for you and your baby. I know how difficult this must be. Good luck. I hope this might help you. Oh, they are both at UAMS hospital In Little Rock, AR.
Best,
Monica

Just an observation…, you joined this group a day before my hemorrhage. And do you know what caused these other problems in your daughter? Cause I’ve never heard of them being associated with an AVM. well, I guess it might be a little different. What exactly is a VGM?

I would just like to say, on the positive side, I’m just glad she hasn’t hemorrhaged yet. Hopefully it’ll be fixed before it does!

Hi All,

Well, its been a long time since iv been able to get back to all of you, Little Maddi was born c -section, and seemed to be coping well, she was a month in NNICU, and home for 3 days, before our nightmare began. We rushed her back to hopistal with breathing difficulties, and her embiolozations were booked, she went under twice and they closed of 4 main feeders into her VGM ( Vein of Galen Malformation ), we thought she was doing better, although still on a ventilator! but in her month of being in hopsital after the surgers, the "stealing"effect had set in and her head had started to swell tramendously, they did another MRI, which picked up severe hydrocephalius, and that the "stealing"effect has taken all the oxygen away from her brain, and she had suffered sever brain damage. We were told that if she made it through the next surgies, that she would have severe cerible paulsey, were no quality of life what so ever. It was an extremely difficult decision to make as you all know as parents we are suppose to protect and care for our children no matter what! After a lot of soul searching, tears, and break downs, we made the difficult decision to terminate life support and let her go. She passed away in my arms at 4.00pm on Friday the 11 February 2011, she was just 4 months old.

I wish all of you the best, stay stong for your kids, and keep your chins up.

Il keep checking in every now and then, if anyone wants any help or advise

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Please look into dr berenstein at st lukes -roosevelt hospital nyc, the exact same thing was wrong with our baby and after seeing many other docs he has given our son the best chance at a normal life he has over 30 years of experience and a special unit dedicated just for the treatment of these babies. I can give u more info but please look into it he is our angel