Wednesday, September 1, 2010

update 3.13.10 (warning it’s a long one)

Three doctor’s appointments kept us busy yesterday. Two fairly routine, a regular check in with my OB here in town which keeps us from having to go up to the city every two weeks, and the other my ninth ultrasound in the past six months of my let to double check and make sure the asymmetrical swollen preggers feet wasn’t something more nefarious than my poor posture or baby putting the pressure on my left leg.

The third, an appointment with a geneticist and brain malformation specialist at university hospital. It was not an appointment we were looking forward to. Though not a meeting filled with good news, it was a meeting filled with compassion. The doctor shared with us that he and his wife lost a baby at birth. He reviewed the MRI images and clearly articulated and showed us what lead him to his conclusion, comparing our son’s brain images with that of a normal child. Between David’s biology major and my recent trainings at work regarding trauma and the brain we were able to follow what he said pretty well. I can’t promise I will be able to explain it so great.

He noted that though the images were blurry he can still see enough to identify what he believes to be an accurate diagnosis. It is a very rare disorder called Aprosencephaly. He noted that we could look it up but there is very little research regarding this condition because it is so rare. Gideon’s brain does not have important structures that are vital in the correct formation of the brain. Ventricles are fluid filled spaces in the brain where the fluid that protects and bathes the brain is made. They also create the pressure to push the rest of the brain structures and form correctly during brain development. A genetic goof has very early on prevented Gideon’s brain from forming. The microcephaly is secondary, it is a result of the abnormalities in the brain.

The only good news from this unexpected pre-natal diagnosis is that is very unlikely to be a recessive trait disorder. Our chances of having healthy, normal babies in the future are as good as anyone out there.

At this point in time his brain stem appears to be functional. The brain stem regulates the very basic life functions, breathing, and heart rate. That stuff.

This has several implications. There are several possibilities when Gideon is born should God’s decision for his life not be one of miraculous healing. One possible outcome is that he will be born and with in minutes not be able to breath. That he will be able to breath on his own but over the next few hours or days develop apnea as his underdeveloped brain is unable to provide the information the body needs to function. That he could come home from the hospital with us and live from a few months to nearly a year before his brain simply cannot provide the information his body needs to survive and he will die either from an apnea (trouble regulation breathing) or not be able to swallow and regulate basis bodily functions. This doctor predicts that it is very, very unlikely that Gideon will see his first birthday.

And so we face some very difficult decisions. Fortunately the doctor informed us that legally we don’t have to worry about allowing the Lord to take Gideon home by not instituting extreme medical procedures. But morally and ethically what to do is a lot grayer. The miracle of modern medicine doesn’t come with a handy instruction manual when it should and should not be used. How will we know if we should let him go or fight for him with all that medicine can offer. As the doctor said, we can keep anything alive but we are left with the question, is it right, is it humane, is it God’s will and desire that we should do so?

David could not have said it better. “I don’t want to get in the way of God doing a miracle, but I don’t want to try to do it for him either” so I will carry Gideon to term. For two more months he will be safe in my body, I will provide for him and protect him while I can. But when he arrives will I be able to make the best decision for him or will I be seduced by my selfishness and hold on when I should let go, or let go when I should hold on?

We can only pray and hope that those are decisions we will not have to make. That God’s power will be revealed in that delivery room though healing. Though we know that is power will be revealed through his grace and peace no mater what the outcome.

As David and I make these difficult decisions we covet your prayers. There are many who will have strong opinions about the decision we make. Please understand that David and I will make decisions about the intensity of medical interventions we will utilize through a great deal of prayer and hoping and believing that these are back up decisions because of the wonders God can show us in the end. Ultimately we will be obedient to God and trust that our support team will join us in prayer with us and continue to offer compassion and love as we face these trials.

Thank you for being a part of this journey with us. It’s not over yet, and we will not see this news as final. We will continue to trust in God for all he has for us. And as Angie Smith, wife of Selah singer Todd Smith reminded in her blog, my prayer is most of all that God will bring those things into my life that will make the soil rich for his love to grow. That I will not simply pray for sunshine but for what will make my life a place where God and be glorified. Even if that is rain. Thank you Amanda for helping me find Angie’s blog and for sharing your story with me. To know that I am not alone offers immeasurable comfort during what is so far the darkest time I can recall in my life. Thank you all for helping me to believe the light at the end of the tunnel is not a train after all.

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