We are not experts by any means, but we've been where you are now. You've heard some bad news, your head is spinning and you aren't sure if your heart is beating anymore. It hurts. We know.
We want to offer ourselves to you, to talk, to share, to pray, and to do whatever else we can to help. Please email us, tell us your story, share your fears, and let us help you bear this load.
We want to share our thoughts with you, and help you prepare as you enter this road that we have already traveled. You are being presented with impossible choices, and we want to help you through that.
One of the most difficult decisions is whether or not to have an amnio test done. This test carries with it some risks of premature labor, but the risks are relatively minor. What we'd like to share with you is that there are both pros and cons to having the test done.
First, the pros. You find out genetically what is going on. They can't identify everything with this test, but you can find out some things. If you are fortunate, you may discover that your baby is classified as Achondroplasia, which is typical Dwarfism. These children of course can grow up and live very normal lives. Granted, they'll deal with some of the social issues related to Dwarfism, but you can help them through that. What a wonderful experience it would be to help a child adapt to a world that generally does not consider his or her special needs! We can imagine what it would be like to help a child like that feel tall on the inside, even though he or she may not be on the outside.
If your diagnosis is a lethal type, like Thanatophoric Dysplasia, at least you'll have time to prepare. Your Doctor may recommend terminating the pregnancy if this is the case. One of the best arguments supporting this is that termination can be seen as an ultimate act of love for your child. You do not want your child to suffer, so you terminate. Our view is that there is no evidence that supports the premise. How can we know that a child's suffering is not increased with early termination? Can we rightly say that aborting the pregnancy absolutely eliminates all suffering? It is likely that the child will suffer irregardless. The real question is, do you want your child to suffer at your own hand?
The pros of the amniotic test are that you may get an absolute diagnosis which will allow you to prepare for what is to come. But there are cons also. If you do receive a lethal diagnosis, you may notice a change of approach in the care you receive. The Doctor who delivers the baby may be less willing to go the extra mile to ensure that the health of the baby remains a priority. The baby is going to die anyway. The mother's well being will take priority. If the baby's heartrate drops during labor, there will be no emergency C-Section. We were fortunate to have good doctors along our way who valued Kolby's life as we did, and who were willing to consider him. You may not be so fortunate. Doctors have no problem recommending a C-Section when circumstances justify it, but if your diagnosis is lethal, they may talk about how dangerous the surgery is to the mother and not recommend it at all.
Another con is that if you receive a lethal diagnosis, you will carry it with you for many months. The pain of this reality is almost unbearable. We had roughly twenty weeks of being reminded that every time Kolby moved in the womb that his days were numbered. That was difficult. Sometimes we wished that we had never known.
