Tuesday, February 28, 2006

Welcome to Holland: Part One

Those of you who have been blessed with special children probably are familiar with the article "Welcome to Holland". If not, please read it. It is about the experience of learning that your perfect baby has a severe medical problem. This is something that I think you cannot imagine unless you have actually experienced it. People say, "Oh, that must have been so hard for you when you found out", and yes, it was, but what they can never understand is that the joy my special baby has given me, and continues to give me, far outweighs the heartache I experienced when I found out she had hydrocephalus! This blog is going to be about the joy of my little girl's life, but in this first post I want to talk about the hard part: Finding Out.

I was 35 weeks pregnant when I found out that the perfect baby I had been carrying for 8 months had hydrocephalus - a condition I had never even heard of before that moment. My husband had come with me to a sonogram on Thursday February 2nd, 2006, which had been scheduled to get an estimate birth weight and size of my baby, who was due on March 4th. We were delighting in the image of our little miracle up there on the screen, and didn't think much of it when the technician said, "I just want to check something, hang on" and pulled out the printed images from my 20 week scan. A couple of minutes later she proceeded to tell us that the baby looked to be a healthy size and weight. Then came the words no parents-to-be ever want to hear: "There is one thing...", and she told us that it looked as though cerebrospinal fluid (CSF) was not draining properly from the baby's brain, which meant that the ventricles had filled up with fluid and squashed the brain tissue into a thin layer under the skull, which had already expanded to the point that there was no way it would fit through the birth canal. Before we left the doctor's office that day they made an appointment for us at Prenatal Diagnostics, but they weren't able to get us in until Monday, which meant that we had an entire long weekend to think about and stew over the whole thing.

I can tell you that I left the doctor's office that Thursday afternoon in a stupified daze. Of course, because I had never heard of hydrocephalus before, I was trying to memorise the name so I could look it up, and it still hadn't sunk in that this was really happening. I can remember being very concerned about having to have a c-section because I had planned to go natural! Just a minor detail in the long run of course, but that was the only thing I was able to wrap my head around at that time!

I am a person who has always had a deep faith in a loving God, and my husband also, so of course we both spent a lot of time over those next few days on our knees praying that this baby's sickness would be healed. We spent every available moment on the internet reading up about hydrocephalus and filling our heads with all sorts of scary statistics and figures. I kept on hoping that when we showed up at the Prenatal Diagnostics appointment on Monday they would take a look and say, "Well, I don't know why they told you that, there's nothing wrong with this baby!" On Sunday Gabe and I both had blessings, and I sat down fully expecting to hear "Don't worry, all will be well", but instead I heard, "You will be blessed with the strength to get through this, and you will be blessed with joy". That was when it first hit me that this baby really was sick. That was when my tears came, and all Gabe could do was hold me.

It hit Gabe the next day at the doctor's office. Of course, they did confirm that Avery really did have hydrocephalus, and we were sent all over the building for different tests and scans. We were sat down with doctors and advisors and counselors and bombarded with statements and questions and warnings. At one point we were sitting in a room by ourselves and Gabe was calling his mother to ask her whether there was any history of birth defects in the family, and that was when he broke down.
At this point of course we were being told all the worst case scenarios, and we had know idea whether our sweet little baby would even be able to function, let alone at what level. We were told to prepare for the possibility that she would have severe physical and/or mental disabilities. There are no words to explain how it feels to have the perfect baby you've been planning for taken away from you like that.
More on the arrival of our little girl next time...

1 comment:

Kristen said...

Much of what you say I understand. My daughter was diagnosed with hydrocephalus at 20 weeks gestation due to aqueduct stenosis. I delivered her at 37 weeks 3 days pregnant. Her head measured 48 cm. I keep a blog about our experience as well.

Your little girl is sweet and I've enjoyed reading your posts. You express yourself beautifully.

Take care.