We had another visit with the neonatologists last week.  They did the ultrasound, and it’s pretty cool to see how the bones are developing.  When you get the usual ultrasounds at 20 weeks, the bones are really more like stiff jelly.  When the bones start to solidify, it creates strong shadows on the ultrasound.

The brain has ventricles, that create CSF (cerebrospinal fluid) that flows up through the brain, and then down the spinal column.  This is essentially what we commonly refer to as spinal fluid.  One symptom that accompanies Dandy Walker Syndrome is hydrocephalus, or ‘water on the brain’.

Festus’ ventricles are dilated, almost to double what they should be.  One should be about 10 cm, it’s 19cm.  It’s putting pressure on his cranium, pushing it out.  As of today, we’re 29 and 4 days along, but his cranium says we’re 34 weeks along.  His head is four weeks bigger than it should be.

What does this mean?  More festivities at the party.

We’re going to meet with a neurosurgeon in a month to get their assessment on it.  That is, do we do the brain surgery a couple days after his birth, or a couple hours?  And then he’ll spend a week and a half, maybe two weeks in NICU.

Sigh.

I hate this.  I really do.

I must concede, there are blessings to knowing what is happening.  There are others who might be in the same situation, and have no idea that their pregnancy is like this.  In a worst-case situation, they might have a 6-month old that is crying as though he’s in pain non-stop and not know why (it would be because the cranial pressure was crushing his brain).  How scary then would it be to go in, be told his head is measuring too big, he’s got hydrocephalus, and he needs a shunt put in his brain to relieve the pressure.  Then they find out part of his brain is missing.  Ugh.  How horrid would that be?  Awful.

We know what’s happening, we can anticipate what is going to happen.  We can start with a therapy program within days of his getting here to make sure his brain develops, possibly compensates for the missing vermis.  We are able to schedule his brain surgery, long before the pressure does any damage.  We know to look for developmental milestones.  Now, not all children hit the milestones when they should.  The last specialist we met with told us one son was walking at 9 months, his second son didn’t walk until 18 months.  He admitted he was biting his fingernails.  So if Festus isn’t walking at 18 months, we’re not going to cede he’s bound to a wheelchair.  But we might not be sleeping so well.

This is tough.  There are people who have families with such challenges, and they seem to not even notice they have them.  How do they do it?  I wish I knew.  Natalie and I haven’t had a good night of sleep in months.  We don’t feel like we’re stressing over Festus (there has been plenty to stress over this summer).  But neither of us have slept well for more than three hours.  In months.

For those that read this, please let me know if you know of anything with core blood research.  Any studies, research, success stories, failures even.  I once heard a fantastic story, and then the genetic counselor said she couldn’t find anything.  Rather than call her a liar, I’d like to help her out, and I could use your help.  Thank you, in advance.