Faith's Appointment Update(LONG)

iVillage Member
Registered: 08-20-2004
Faith's Appointment Update(LONG)
Sun, 07-16-2006 - 12:23am
Well I will try and remember everything they told us! LOL First we met with the plastic/reconstructive surgeon. She told us that it's going to be a big undertaking and very involved. She said that they have had many encephalocele/reconstructive surgeries and their success rate is in the high 90th percentiles. HOWEVER...the encephalocele that they usually see are 1/3 the size of Faith's. She said that they don't get a chance to operate on those as large as Faith's because the babies don't survive long enough to make to a point where they can even start to think about surgery. Keep in mind that the size of Faith's is now half the size that it was at birth. The doctor said that she is that much more of a miracle!!! Once again we are reminded of what an incredible miracle she is!! (not that we needed to be reminded!) Anyway, we first talked about what would be used to create skull where the hole is. We found out that there are a lot of bone deformities (duh) that will require very tedious work. Unfortunately they can't use any synthetic materials to creat a scafolding type thing to close it up because synthetic materials will not grow as her skull and head grow. I asked about using bone from one of us and she said that our bones have reached adult size and we would face the same non-growth issues. She also said that cadavar bone would pose the same problems. She said that what they have to do in children this size and age is that during the same time as the brain surgery they would have to take 2 portions of ribs from each side of Faith and graft them to the skull. Unfortunately because she is so small they don't know if those 4 portions will be enough for the entire graft so it may take more than one surgery for the rib bone grafts. As far as scalp is concerned the plastic surgeon is hoping that the soft tissue on the encephalocele with hair can be salvaged and used for scalp. However, that skin is constricted in certain areas and we won't know until after test if they can salvage it and use it again. IF they can't then they will have to use expanders. Expanders are surgically place under the scalp on the front top of her head weeks or months before surgery to expand the scalp so that it can be stretched and cover the head and new skull area. So that sums up in a very small nutshell the plastic surgery part. Now for the Neurosurgery part......
We met with the neurosurgeon (NS) who went over some of the same things as the PS and went in to some minor details about the brain surgery. There are a lot of issues that need to be discussed and LOTS of tests (computer imaging, catscans, x-rays, mri's, ultrasounds etc.) that will have to be done. Those images will then be sent to a lab where they will take all of those images and create a 3D model of Faith's head and brain inside and out. This will allow the doctors to study in 3D the vascular map, brain placement, skull dememtions, hole demention etc, so that they know exactly what they are dealing with and can litterally make a map and plan for the surgery. Making the 3D model alone can take up to 3 months. The NS thinks that it may take several surgeries to complete the reconstruction and there may be 6 months to a year in between each surgery. Of course there are a LOT of risks involved but that's the case with any surgery. The doctors were positive and amazed at Faith's progress since November. Her NS said that she wasn't even the same baby she was in November. There is one MAJOR thing that he is concerned with and that is the Sinus vein that runs up the middle of the brain in between the two lobes. It's the main vein in the brain (I say that and the first thing I think of is that song "insane in the membrain...LOL...sorry) and it runs through Faith's encephalocele. Even in an adult if that vein somehow gets clamped off or severally damaged it's irrepairable and results in death. The doc said that a tiny whole can be repaired anything beyond that would probably be fatal. The issue is it's possible that the vein is attached to part of the skin that will have to be removed because it's on the sac that their removing and they would have to try and seperate that vein from the sac and place it correctly. IF he doesn't feel that it can be safely seperated he said he may just have to take that tissue and attach it to her "completed head" which may mean she still have a small bulge on the back of her head but I figure hair would eventually cover it if that's the case. So that about sums it up now we are waiting for him to call with the first set of testing schedule. It won't be until after all the imaging is done and a plan in developped that we will make the final decision as the whether or not to do the surgery because it won't be until they know what they are facing and what the surgical plan is that they can trully know what risks are involved and the details of the procedures. The ball is rolling and for now I'm enjoying each and every day because I know before long I'll be almost living in a car going back and forth for scans etc. on a regular basis!! Lisette I may be calling you quite a bit since I'll be in Winston so much!! LOL We may really get to know each other before long!!!! At least I'll have the support of a fellow SB so close!! Well I'm sorry it was so long but now you all know what we know and will know how to specifically pray for us, Faith, and the doctors! Thank you for getting this far in this post!!!
Lu Chris and Faith


iVillage Member
Registered: 10-23-2003
Sun, 07-16-2006 - 4:08pm
Oh wow your little Faith is a miracle baby.Thanks for letting us know what is going on with your family.You really have a lot going on with your dd.That is very encouraging that Faith will be able to be helped by these surgeries but it must be really scarry as well.Its amazing what surgeons can do these days.It sounds like you will be even busier really soon.Please let us know how you and your dd are doing.That is awesome to hear that she is progressing so well.Hugs to you and your family.


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