Monday, May 21, 2012

Nothing Else to Lose

Me, just one week before Lily's arrival.

Prenatal Diagnosis of Fetal Stroke

The next step in our journey involved a trip to Wilmington, North Carolina to see a specialist where we would get a more detailed sonogram and blood testing.  I had a bad feeling about this place from the moment I stepped in the door. First, they do not allow children in their office AT ALL. Then, there was soft, soothing music being played in the waiting room which was dimly lit and smelled of lavender and disinfectant. The two women already in the waiting room were obviously pregnant with multiples. I have never seen such huge baby bumps! Once you are called back, you get your own private nurse and your own private waiting room. And every room was equipped with a box of tissues as if crying fits would ensue at any moment. It was just creepy.

After seeing the sonogram technician we were whisked into our waiting room. And we could hear NOTHING! No footsteps down the hall, no quiet chatting in the next room, no flushing toilet, no overly soothing music, nada. It was unsettling because we were anxious to hear about Lily Pad. 

Finally, our nurse took us to a conference room in the very rear of the building. This should have given us a clue as to what we were about to hear, but it never registered with us until months later.  We were joined by a Genetics Counselor and Obstetrician, both whom we barely knew, and one of those boxes of sandpaper Kleenexes was unceremoniously placed in front of us. Another clue unregistered. What came out of their mouths next would haunt us for months to come.

They told us that Lily had several bleeds, strokes, in her brain and the sonogram revealed her brain ventricles were filled with blood. They did not know why this had happened or how to help her.  In addition, to the bleeding, Lily was also missing part of her brain, she had a cleft palate, and had a heart malformation.  It was theorized she had Dandy Walker Syndrome. In short, Lily would not live. On the slim chance she did live, she would probably be a vegetable. They suggested we have an abortion. Unfortunately, this would not be the last time abortion would be recommended to us. The doctors told us they could send us to another specialist to see if they could help us, but the Wilmington doctors could offer us no other assistance. They recommended The Children's Hospital of Philadelphia, Houston Children's Hospital, and Duke University.

My husband and I literally felt we had been hit by a Mack truck. I absolutely could not believe what I was hearing. This is the kind of thing you watch on Discovery Health or some other medical show.  Things like this did not happen to our family! What emotions were we experiencing at the time? Anger, frustration, disbelief, grief, sorrow, fear, desperation, depression, hopelessness.

Abortion: when faced with this option it actually seemed a feasible possibility given Lily's prognosis. Perhaps the greatest test of my Christianity came at this moment. Would God want me to carry a child to term only to watch it die anyway? Would God want Lily to suffer? Would God want me to suffer? Surely the Lord would condone such a heinous act as abortion when unavoidable suffering was involved? It seemed like the "right" thing to do and I was tempted.

Sweet Lily Pad is just a few weeks old.
But God loves us from the womb. We are fearfully and wonderfully made. And life begins the moment sperm and egg are joined. I knew this, have always known it and so I said no to abortion. Whatever suffering was ahead of our family, I had to let go and trust that it was indeed part of God's plan for Lily.

So, we asked to be referred to Duke University to see if their doctors could help us. But before leaving they sent us home with literature about the abortion option and a book to read to Lorelei and Lucas in the event Lily died. This was a completely sobering moment and it nauseated us to the core. We were then whisked out the back door of the medical office for fear our tears would upset those in the front waiting room. This is the only time I have ever been asked to leave by the back door of a doctor's office.

Bo and I said nothing the entire hour trip back to Jacksonville. Our friends and neighbors were waiting for us when we got home and we broke the news to them. They prayed for us and for Lily. After the prayer, Bo and I threw away the literature given to us by the doctors because we did not want to focus on man's prognosis for Lily, but God's. Even though it seemed absolutely hopeless, we held on to our faith and God's promises to give us a hope and a future. After all, we had nothing else to lose...