Daisy will have to undergo complex reconstruction surgery.
I don't think I will ever come to terms with this.
Daisy Craniofacial Surgeon sent the report from our recent visit to GOSH , I gulped as i read the words ' she will have formal calvarial reconstruction but as yet the skin is too thin and the calvarial one is insufficiently developed to consider this'.
Here is a link to his web page www.daviddunaway.co.uk I'm proud to say he is know as one of the top ten Surgeons in the World.! As yet I cannot find any information on the operation, (take a breath..... and another....)
OK, right well
We are now waiting for Daisy Skull bone to mature to its greatest density. (thickness) . The bone defect (area of NO skull) has closed as ,much as it will. Now Daisy is left with aprox 7cm X 6cm of head area not protected by Bone. The open area is where you would expect a babies soft spot to be. Not the est of places, probably the worse area of head to leave unprotected. On the top of our heads is the main Blood vessel that carries Blood and Oxygen to the Brain, It feeds our Brain. Without this, or if there was a problem with this major Vessel we would be Brain damaged, Or Dead. If this main Blood Vessel gets torn or rupture the complication would be hemorage probably coursing instant Death.
Most of the body has muscle surrounding any bones, our heads however, do not. Its simply scalp, thin fatty tissue and Skull Bone and the Brain Dura matter (outer Brain) Our Brains are protected completely by compound (compressed, strong) Bone. Most Head and Skull defects are life thretenting and general need many life risking operations to prevent further complication. Daisy has a Skull defect the only 1 doctor we have spoken to has ever seen before. I'm not sure if Daisy Surgeon has perform this operation before, this is my top question on our next appointment to GOSH.
Daisy Bone density with not be at its greatest until she reaches 7/8 years old. We will probably just be waiting for the scalp to be ready for an operation. At the moment she has a layer of weak, unhealthy thin skin. The skin on our head is the strongest in the body, thicker than any where else. Again as the rain needs extra protection. To break the skin on our heads is fairly difficult. More so is the Skull.
Daisy's Skin may never be strong enough to help hold the bone in place after reconstruction surgery. Time will tell. There will be a high risk with Daisy skin that the surgery will fail. As it has done before in other operations that children with Adams-Oliver Syndrome have had. I've yet to read how great the surgery was from any information on the net. With patients that have a the Bone defect as well as the scalp (Skin)
Now my head is spinning, I will continue again soon, now i must cuddle my half asleep man xxx
Daisy was born with a rare genetic Birth Defect. Adams Oliver Syndrome. As a mum, I share our lives in this blog. Thanks for your support.
