We learned yesterday the baby has a condition call "..Holoprosencephaly" "Lobar". It is a condition that is normally linked to Genetic factors. In our case it is not though. They are not sure why it has happened, or don't know if they will ever know. The chances of this happening to us are like us hitting the lottery. Here is some information I can relay to everyone: It is only the lobar condition. There are 3 subtypes. Hers is the least dangerous.
**Virtually all surviving individuals have some degree of developmental delay, often persisting as mental retardation; this generally occurs in direct correlation to the severity of holoprosencephaly. However, case reports do describe individuals with lobar holoprosencephaly who have normal or near-normal development.In addition, feeding difficulties leading to aspiration pneumonia and/or failure to thrive frequently occur in individuals within all subtypes
**The age of onset is at 3-4 weeks of gestation.During early embryonic development, the frequency peaks at 1:250 but progressively declines because of high fetal mortality rates and elective pregnancy termination, which results in an incidence at birth of 1:10,000-20,000
**Lobar holoprosencephaly is the least severe form, with almost complete formation of the interhemispheric fissure and only focal areas of cortical continuity across the interhemispheric fissure, usually anteriorly.Sometimes, lobar holoprosencephaly is limited to an absence of the septum pellucidum
I know this may be hard for some of us to understand, There is allot of research going into this right now. I know that surgery is not an option, due to they have nothing they can do in that understanding. I just want to thank everyone for their prayers. Keep praying for Gabby, That is all we can do right now. I go for an MRI on May 14, and I will find out on May 16 what level it is that her brain has not formed. The good news is that she could if the brain has someone formed, could live a somewhat of a normal life. I myself am just tyring to understand, why right now. I know there is a plan, I just don't know what it is yet. Thanks again for your prayers...
love you all so much,
Maria & John & family
