Hello, Ive been on this site for months, but have only just started replying!!!
Wod, your questionnaire was amazing, it had every feeling I go through on a daily basis.
My baby was born with extensive pws on her right arm, hand, shoulder, chest and top of her back. We were originally told 3 days after id had her (it took them that long to tell me she had a problem, and because she was jaundiced I never noticed it)!!! she had an elephant man type syndromme and the vessels leading to her arm would have to be cut!!!! (I asked the midwife who handed my baby to me, after my c section, did you notice it, she said she did, then WHY THE HELL DID NO ONE TELL ME!!! I had to ask to see a doctor. the next day we were seen again and told she had a pws and her thumb was a haemangoma, we were then referred, when we were told no it was all port wine stain, and to go away and stop worrying and they would start laser at aged 18 months. When I asked was her pws arm a little longer, the doc said,oh dont worry theres an op I can do for that!!!! when i asked what it was, he said dont worry, its very simple now go and enjoy your baby!!!
I went away, FRANTIC,
I trailed every website going, got all my information together and found a fantastic vascular abnormalities team, I rang them up, told them I thought she may have Klippel Treanany syd, had read that the earlier the laser the better, I was seen the next day and they agreed with all I had told them and put me on the next available list for laser!!
I feel so full of knowledge now that I get frustrated by the medical profession, ie my gp did not even know what kts is!!!!! My daughter recently attended accident and emergency as she had a very high temp, the docs asked me did she get the rash appear with the temperature??? When she was seen by a paediatrician at the hospital he said oh ive only ever seen one of these in my whole career. Basically my daughter had a non blanching mark on her leg and they suspected meningitus. They kept her in for 3 days and luckily it was just a nasty virus. When I asked could the non blanching mark of had anything to do with the PWS, ie her internal venous system, he answered well i dont really know!!!! My god!!! I felt desperate.
I struggle with this so much, me and my partner feel so alone, none of our famillies understand how we feel so scared for maisie, how she will cope with it, will she hate it, will she feel different, will she blame us. All they say is get a grip and she wont die!!! I cant stand the thought of my baby going through a general aneasetic but i know i have to give it a shot. I recently had a nervous breakdown because I felt so desperate, so sad, so guilty, i couldnt stand people looking at my prescious baby.
The work you are doing is amazing. By God how it is needed. I would love to assit you in anyway I can. I feel very passionate that people should get EARLY DIAGNOSIS, support, help
My email address is
I am (nearly) a qualified counsellor, however it has not helped me in being able to cope with this awful journey. I would take the mark from Maisie tomorrow if I could, Im angry, i just hope time will heal
Thanks and good luck with your work.xx