You see. He was an identical twin. His brother died at approx 19 weeks and my SIL carried to 33 weeks. We really did not know what we were facing but knew there was something wrong. He entered this world the normal way but was immediately taken to neo-natal. Doctors were initally baffled by his condition. He was born with 13 open wounds all over his body. The major one on the top of his head. As the skull had not formed, we could see the membrane . He stayed in hospital for over a week, but was good to come home while he healed.
SIL would sit up late in the night/morning knitting little beanies that could tie under his chin so to protect his wee little head. Heal it did, but unfortunately he developed a callus and the skin surrounding that area (the size of a baseball), was like a burn victim and therefore has no hair.
Two weeks ago, he had the first operation to surgically repair this area. He currently has the nickname Frankie (making some light of the situation) - due to the shape of his head. It will triple in size over the next coming months and we watch him constantly. No jumping, pushing, etc but pretty hard when you are a 3 yo that thinks he is Superman
I just want to thank our Doctors, Nurses and all those behind the scene amazing people who make this even remotely possible. You are changing the life of one beautiful little boy and I will be forever grateful.
Edited by DamiansMama, 12 November 2012 - 11:28 AM.