My niece's (Jessica) baby girl, Emma, was born with CMTC in June 2011. We live in the Portland, OR area. She was transported to OHSU, since the hospital she was born at had no clue what she had. She spent her first week of life in NICU. We were shocked when we learned how rare this is, but, doing much better about the shock of it al!
We just had an appt today and asked about a support group and were given this web site. There have been so many times that Jessica has wanted to talk to another mother dealing with this!
Emma's left leg is the worst of all of her marks, looks very similar to Emily's son Grayson's leg. There are 4 lesions which break open and bleed, we were told to keep vaseline on them to keep them moist and keep a protective barrier over them. Most seem to have healed but one which is located above her knee. Both of her arms have marks which have faded, but, get darker when she is cold or crying. She has marks on her abdomen, on her back (over her left kidney) and a small one on her head that is fading and being covered by her growing hair.
They said her spine was crooked when she was born, she has one less rib on one side and her left kidney is smaller.
She had a glaucoma test, negative!
Her left leg is 1/4 inch shorter than her right.
But she is beautiful, happy and growing! She is advancing as she should. We are thankful to have found this site!