34 weeks

Baby Jake Update- 34 weeks-Surgery appt.

by Erin Castellano on Thursday, April 22, 2010 at 4:40pm

 

So todays meeting was informative. The surgeon we met with, Dr. Gollin, was great. Looked like Bill Nye the Science Guy. He said they discussed our case on their last meeting. After throughly reviewing our file and talking with his wife, Dr. Gollin the Radiologist, he came to the conclusion that it did not look like a sacrococcygeal teratoma (SCT), as previously diagnosed, it looks like a Lymphatic Malformation. He was not 100% sure that this is what it is. But if he had to choose between the two, this is what he would say it was. He believed it was not an SCT because what looked like the external portion of a tumor, does not have a large vein connected anywhere to it supplying it blood. It just looks like a large amount of fluid filled cysts coming off his backside. The internal portion of the "tumor" also does not have a vein anywhere near it. When a tumor grows, it also grows as a mass. Jakes internal "tumor" actually is growing all over the inside of him in as fluid filled cysts, wrapping around his kidney and down into his leg. It is not a mass. At this point my heart was racing because I knew what was coming next, was this better or worse? It has its pros and cons, but it is not as life threatening as as sacrococcygeal teratoma. What a relief! But Im not about to get my hopes up that this is what it is. Dr. Gollin even said that it could end up being something totally different or could still be an SCT, just so we dont settle on this. But he is leaning towards a lymphatic malformation. The downside of this is that it is something Jake may have to deal with throughout his life. The upside, he will not need surgery right away. He can even come home not long after delivery and go back and forth to Loma Linda as treatments are needed. Its still a "play it by ear" situation.
So....a lot of information, but a lot of good information. Dr. Gollin said if it hoped it was one or the other, he would hope it would be a lymphatic malformation, which is what he thinks it may be. So we are hopeful. The plan is to still deliver me at 39 weeks (end of May). Once Jake is born, tests will be conducted and they will know for sure what is going on. Need to hold out another 5 weeks.
Next Dr. appt and ultrasound on Tuesday.
Thanks again for everyones support.
erin

A few websites to help explain a lymphatic malformation:

http://www.childrenshospital.org/az/Site1256/mainpageS1256P0.html

http://www.lpch.org/diseaseHealthInfo/HealthLibrary/ent/lympmalform.html