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-   -   Internal Hemangiomas with PELVIS syndrome (http://birthmark.org/board/showthread.php?t=5354)

spaatz1329 06-07-2011 08:13 PM

Internal Hemangiomas with PELVIS syndrome
 
Hi Everyone!

My daughter was born two weeks ago today, she is my 4th child. She was diagnosed shortly after birth with multiple internal hemangiomas with PELVIS syndrome. She has an external hemangioma between her legs that the Derm is watching for growth, she has a deformity of the bladder and spinal tethering, related to the internal hemangiomas, and is having a bronchoscopy tomorrow because she is exhibiting some stridor and as a result may have a subglottic hemangioma as well. The derm has not started her on propanolol yet, prefering to wait until the external starts to show signs of growth, although if we see a subglottic I guess that may change. That's our story, this has been an overwhelming two weeks as this was completely unexpected and resulted in a 9 day NICU stay and a battery of tests. I am glad to have found this community though and am hoping to draw some support from it!

KatieG 06-07-2011 10:47 PM

Best of luck to you and hang in there! I think the beginning is the worst because there is so much of the unknown there. Keep us updated!

missy 06-07-2011 10:58 PM

Hi and welcome!

Congratulations on your new baby. What a hard time for you, but come here to vent and bounce ideas. We're here for you!!

Missy

smurph 06-08-2011 02:34 AM

Wow! That's quite a bit to deal with in two weeks. It must be so overwhelming. It sounds like the doctors are trying to gather as much info as they can so that is good news I think. There are so many wonderful people that I've met on here over the past 6 years. It is a great place to draw support from so keep us posted!
shannon

nickbar 06-10-2011 05:42 PM

If you don't mind, would you write to me via email. I'd like to see if there is something we can do to help with any expert advice you might want (second opinions?, etc.).

Corinne

mortman 07-05-2011 03:11 PM

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

spaatz1329 07-18-2011 04:58 PM

thank you! it is hard to have a diagnosis that is so rare. there are always a lot of unanswered questions!


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