I went and met with Dr. Dilustro. (CHKD Neurosurgery) He was very nice, compassionate and TOO the point! I really liked that about him. He reviewed the scans and asked what we had been told. I explained that we were told hydrocephalus with the cause possibly being an arachnoid cyst. He then asked if anyone used the term Hydrancephaly? ( Here is a link to an article about it: http://www.theinfovault.net/vault/science/hydrancephaly.html ) I told him that when the receptionist from Dr. Whites office was making the appointment she used the term b/c it was written on the paper and Dr. white said, no, no, no, this is Hydrocephalus. There is a HUGE difference between the two. Dr. Dilustro, said "I agree with Dr. White." Hydrancephaly is where there is little or NO brain tissue and they are able to see clearly brain tissue on Lillian. (Its compressed)
So, he explained to me what to expect after her arrival as far as what they will do. He said that as soon as she is born, he will evaluate her. If the fluid on her brain is making her sick then he will place two tubes with an external catheter to drain some of the fluid away. While he does this then he will place dye in and they will do an MRI. It depends on what they see on what they do next. If the dye stays isolated to the area with in the cyst then he feels that it is the cyst causing an obstruction and he may be able to break up the cyst without placing a shunt. (The fluid should flow freely) If the dye spreads then the cyst is deeper and they need to place a shunt to ensure proper drainage. Now if she is born and is not "sick" from the fluid, they will skip the external catheter, do the MRI and proceed from there. We will still not know the extent of damage done or her prognosis for months to come. (Due to the compression of her brain tissue) He went on to say that she may remain at Sentara or she could be transferred to CHKD. I guess it will depend on her particular case and etc.
He said to make sure that once we have the C-Section scheduled that he is told the date so that he is able to make arrangements. We return to EVMS on Thursday for another scan, and my OB appointment. I think we will finally schedule the date of the C-Section. So, I will post again then... I am continuing to pray that her ventricles remain stable.
I am SO grateful that we live in an area that we have specialists available to us!! I have read so many blogs where families have to travel hours away to get the required care.
"Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit." – Romans 15:13 (NKJV)