KOLBY'S STORY

After the ultrasound, the Doctor entered the room with a concerned look on his face. He didn't want to alarm us, but he had to tell the truth. The bones in his limbs were 5% as long as they should have been. This was a red flag, he said. No need to worry yet, it may mean nothing at all, but it could be anything from Downs Syndrome to dwarfism. We needed to check it out.

He referred us to a prenatal diagnostics specialist in Indianapolis, whose ultrasound confirmed what our Doctor feared. The bones in the baby's limbs measured only 5% what they should have. There was definitely a problem. Every parent fears those words! The Doctors in Indianapolis had us speak with a genetic counselor, who showed great compassion. There were some horrible possibilities, that was for sure, but there were also some potentially liveable ones.

They recommended that for our own knowing, we consider an amnio test. At first we were opposed to the idea. In our earlier pregnancies, this was the test one took to determine whether or not one wants to continue with the pregnancy, and our choice would have always been to continue. Why should we take the test now? We'd get what we got and live with it when the baby was born. Several weeks later, as we talked things out with each other, we mutually agreed that there would be many benefits to knowing what we were up against. We decided to take the test. As were all the decisions we would have to make, this was a tough one, but more difficult ones awaited us in the future.

A few weeks after the test, weeks which crawled along and were rampant with anxiety, we received a phone call. "I'm afraid it is bad news," the Genetic Counselor said, "It is Thanatophoric Dysplasia Type One." "What kind of hope is there?" we asked. The Counselors heart was in his throat, "This condition is not compatible with life." Thanatophoric Dysplasia was an extreme form of dwarfism. It was universally lethal. Some babies would miscarry, others would be still-born, and the rest would die shortly after birth, usually within 24 hours. After a pause he said it bluntly, "Your baby is going to die. I-I'm sorry." We were too.

It became apparent to us that we needed to go ahead and find out the gender of this baby. There would be many discussions in the future about him in our household, and we wanted to call hime by his name. Kolby became an important member of our family. His life was in the womb, but his home was with us. Our three year old daughter began to refer to him as "Precious Kolby."

As the pregnancy drew closer to an end, we despaired. The bulk of Kolby's life would be spent in the womb. He was an active baby in Mom's "tummy" and it was inconceivable to us that he would soon die. For Kolby, his birth would be his demise. He could live in his world, but not in ours. If only there was a way to keep him in the womb forever!

But what kind of life would that have been? Aren't parents, afterall, supposed to ultimately let go of their children? We can't keep our kids forever. They usually grow up and move out into the world to find life for themselves. That seems to be the nature of parenthood, to teach these little ones to no longer need us.

As much as we despaired about Kolby's approaching death, we knew that we had to face it. We had our family and our faith. The pain in losing Kolby would be great, but the joy in having known him would be greater. The assult of our mourning would be concerted, but it could never penetrate the fortress of our love for him. It would be better to have loved and lost, than never to have loved at all.

Clearly, as people of faith, we could see that in Kolby we would soon be on the brink of a life changing event. We would never be the same again. Deep spiritual and emotional changes were coming our way. Long held metaphysical and philosophical ideals would be transformed, but would we be able to handle what God had in mind?