Hi I am new to this group and new to the whole AVM world. My son was born 12 days ago (at 33 weeks) with a huge AVM in his neck/chest area, with complex feeders extending from the carotid artery and even from the back of his neck. He is in the NICU and had one embolization procedure when he was 24 hours old. Right now he is so swollen because his kidneys were not functioning for his first 9 days of life. Plus each time he goes to the cath lab he receives more contrast dye which is considered an ‘injury’ to his kidneys… it takes several days for his kidneys to start functioning again…He needs many more embolization procedures.
I am looking for any advice, stories of other babies born with these, etc. Thank you.
Hello Patrick’s mom,
This must be a very hard time for your family to be faced with such a scary condition on a new born. I don’t specifically have any advise for you, but there are many people on the board with extremity AVM’s. Mine happens to be on my face, lip, chin, neck area and I’m being treated with ethanaol embolizations by Dr. Yakes in Denver.
It appears to me that you and your son are in a good place right now at Yale. They have a specialized center for AVM’s and you can be assured that they are experts in this field and treat them daily. Sometimes that is one of the biggest challenges for people with AVM’s- finding a qualified doctor who doesn’t just “know they exist” but treats them often enogh to understand them, be confident in treating, and have the skills and expertise to back that all up.
I see you have joined the Parents group. You may also want to join the extremity group and look for other members who have one in a similar spot. AVM’s manifest so differently and it’s almost impossible to compare against one another. But it is always helpful to be able to at least talk with others who know what Patrick is facing, who have experienced some of what your family will, and can possibly be a resource for information if not at least support.
I hope that Patrick is able to build strength and that his kidneys stay as happy as possible to allow the needed embos.
Good luck, and of course keep us all up to date on his progress.