3yo - venous malformations, vaginal and rectal bleeding

[sbm888]

This is quite a long message, please bear with me.....

I stumbled upon this site while searching for my daughter’s medical condition. She was born with a birthmark on her right side of her vaginal area, along with a quite enlarged Labia (venous malformation) and was advised it was just a normal birthmark which would likely disappear as she grew older.

She is currently 3 years old, and her problems started when she was 6 months old. One day her nappy was filled with blood and we were advised that it may have been due to constipation, etc. However it occurred daily and the bleeding became more and more even when her stools were soft.
We were advised to see gastro specialists, etc and had a limited proctoscopy. They identified that there were some venous malformations inside her intestine.

We would regularly see gastro specialists to monitor her issue, and was giving her Parachoc to soften her stools. However her bleeding was very intermittent.

This carried on for 2 and a half years, seeing various specialists throughout this time. December 2011, one morning, her panties was filled with blood..... she had not done a poo, so we were unsure what had caused the bleeding.

Closer examination we realised that the bleeding came from the vagina and quickly brought her to the Hospital.

Since then, she has had daily vaginal bleeding, along with rectal bleeding due to her poos. We have seen specialists now who have advised that the venous malformations have extended to other areas internally. Her vaginal bleeding is as much as a woman’s period on a daily basis.

They have done MRI’s and ultrasounds and have shown us the results, without much advice what options we have but to wait......I guess that's a good sign.

She has recently been taking tranexamic acid to hopefully clot her bleeding, but once again it is intermittent and we cant see any positive results.
I come to your website to seek advice and hopefully be pointed into the right direction with possible solutions for my daughter, as my wife and I worry every day.

we get worried that one day, the bleeding wont stop.....

Have I come to the right place and has anyone encountered a case similar to my daughter's? we dont even know whether this has been diagnosed correctly... some specialist have said hemangioma, some say port wine stain, some say venous malformations... are they all related????

I am in Australia, Adelaide.

thankyou in advance

[missy]

Hi,

Have you seen any of these:

http://vbfaustralia.org/physicians_list.php

Also, try this one:

Swee T Tan MB BS FRACS PhD
Wellington Regional Plastic, Maxillofacial & Burns Unit
Centre for the Study & Treatment of Vascular Birthmarks
Hutt Valley DHB
Private Bag 31-907, Lower Hutt
New Zealand
Ph +64 4 570 9067
Fax +64 4 570 9510

[smurph]

Wow. That must be so difficult. I do not have any experience with that type of birthmark but hopefully some people here will be able to guide you in the right direction. I wish you the best of luck. Perhaps you could contact one of the experts listed here on this site. You can email them and they will get back to you give your their opinion on things. If you look at the Ask the Expert page, you might find someone there. Good luck!
Shannon