Our journey started more than seven years ago, when I was still pregnant with Lizzie.  There is nothing like going for a “higher level” ultrasound to look for a possible heart problem in your unborn child, and being told by the technician that your daughter’s heart looks fine.  I was soaring.  I thought, “I have a daughter, and she’s going to be okay.”  Then minutes later, the doctor comes in with a very serious face and says, “We have a problem.”  He explains that the problem was not with her heart, but in her brain.  So much for soaring; I felt like I had hit a brick wall.  They didn’t tell me what was wrong yet, because I was alone.  I went into the building’s foyer, and waited for my husband to arrive.

That day they told us about hydrocephalus.  A condition that meant our daughter’s brain was full of too much cerebrospinal fluid, which was putting pressure on her brain.  They told us that we had to watch the progression, that it might resolve itself before she was born, and that there was no way to know what hydrocephalus would mean to our daughter or to us.  It was all a big wait and see.

The rest of my pregnancy, we watched the fluid build-up.  Every month we talked to a different neonatologist in the practice, and every month it looked worse to me.  Worse meaning: more black area of fluid and less whitish-gray brain area.  I mentioned this to one doctor who basically told me, “Well, I do know more than you, because I have a degree, but yes it’s getting worse.”  Okay, tell me I’m stupid; then tell me I’m right.  They never discussed ventricle sizes with us, and I didn’t know enough to ask.  No one would tell us what any of it meant.

When we got closer to the due date, they suggested we meet a neurosurgeon.  Our first meeting did not go well.  He spent the entire visit explaining the horrors of spina bifida to me.  After I sat there numbly taking it all in, I managed to mumble something like, “But they told me she only had hydrocephalus.”  The panicked surgeon consulted his nurse, and then apologetically explained he was having an emergency surgery scheduled and things were not going well, and I realized he was having a bad day.  He then explained hydrocephalus to me and what our options would be.  We were told that sometime shortly after birth a plastic shunt (VP) would be inserted into her brain that would carry the surplus fluid to her abdominal cavity where her body could reabsorb it, and that most likely this would be permanent.

Near the end of my pregnancy, a C-section was scheduled, because it was determined that her head would be too large to pass naturally.  However, even in the womb, my daughter had a mind of her own.  Four days before we were scheduled I found myself in the hospital, in pain, and waiting for someone to deliver my baby.  Emergency deliveries kept bumping us.  I thought, “What’s more emergent than a difficult delivery of a medically challenged baby who needs to deliver C-section but is trying to come naturally?”  Hours later, we finally delivered, and my daughter was whisked away to the NICU (neonatal intensive care unit) before I even got to see her.

When I met my daughter, six hours later, the NICU nurse informed me, “You have a very opinionated young lady on your hands.”  These words and the other we heard before she left the hospital twenty days later, “stubborn,” would shape our journey.

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