Vascular Birthmarks Foundation Forum - View Single Post - Internal Hemangiomas with PELVIS syndrome
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Old 07-05-2011, 03:11 PM
mortman mortman is offline
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My 4th child was also born with Pelvis/Lumbar syndrome. He had a tethered cord and a fluid filled cavity in his spine. He is also had a hole in the covering of his spinal cord. Doctors also diagnosed him with a very mild form of Spina Bifida. He has an extra tube coming off his bladder as well as a bifid scrotum. He was also born with a solitary right kidney (his left is missing). His segmental hemangioma grew from the size of a nickel on his left shin (at birth), to his diaper area (at 2weeks old), to the rest of his left leg and hip (by 2 months). We were using topical propranalol on the ones in his diaper area since they seemed to ulcerate frequently. We have seen some improvement...including less ulceration.

In January @ 10months old, he had spinal cord surgery @ the University of Iowa Children's Hospital. They released his cord and placed a shunt to relieve the fluid build up. He is doing great now and is walking and crawling During his surgery it was also noted that he had small hemangiomas on the covering of his spinal cord.

We did genetic testing and were told his condition was not likely to happen to any of our future children.

Let me know if I can be any help or support. It is a pretty rare occurance from what we have been told. We have not met anyone in our area that has heard of our son's condition. Our Neurosurgeon in Iowa City has only seen 2 patients with this condition.

Hugs!
Missy O
Ethan SD

Last edited by mortman : 07-05-2011 at 05:35 PM.
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