Preface: K-T is so diverse that even those with visually like attributes will have deeper disparities as doctors take a closer look. Please take care in generalizing from information provided here. I guardedly present my story because so any KTS kids have told me similar stories. I get the sense that many of the kids track as I did and do. But to say that all kids have or will follow my gestation, development and maturation path would be very disingenuous. I do encourage an open mind and heart. Technology exists today that will give doctors good information about the condition of your child. But, K-T is tricky. Its underlying mechanisms may not reveal themselves until later in the child’s life. I was 18 or so before K-T related issues negatively affected my life. Some kids, particularly those with hypertrophy or hemitrophy show as early as birth. Yet others, don’t show until their legs, arms and frame begin to grow. Time is on the one hand our friend, but it can also be our nemesis. We need lots of patience and love.
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My birth was unremarkable. Well … , other than the nurse who “stole” me away before my mother could see me. After awaking from a short nap Mom asked to see me. In comes the transport cradle with me tucked in nice and warm. No problem, right? Not so quick. The nurse immediately leaves without saying a word about my condition. I’m told my poor mother screamed like hell when she removed me from the cradle and saw my legs for the first time. Apparently, Mom thought I was bleeding to death. I can’t even imagine how shocking it was for her. It’s 1954 and here she is a women with a sixth-grade German education discovering her new-born baby looking like me. It’s particularly sad knowing she was left with no explanation or preparation by the doctors and left to her own experiences to explain the unexplainable. Surely, today’s medical providers are sharper than this and if not shame on them.
At birth these things could have been said:
- Your son has a bi-lateral Port Wine Stain (PWS) from hip-to-toes.
- This Port Wine Stain covers 50% of each leg and the entire pelvic region.
- This condition does not cause pain and it’s best to think of it as birthmark until we do further testing.
- Feel free to treat him like any other baby. He won’t break, bleed or stop breathing.
As a side note, lymphatic swelling was not evident at birth. Hypertrophy or differential limb size were not evident. Underlying chronic vascular anomalies in both legs and feet were undiagnosed and worse, not even suspected.