Saturday, November 26, 2011

The Beginning of our Journey with Timothy & Trisomy 13

November 18th, 2011, will forever be a day that changed our lives.  It was the day that we were just supposed to find out if our little 19 week old baby was a boy or a girl. It was the day that we had been anticipating with excitement and joy for almost 19 weeks.
The technician began the sonogram and then after a few minutes left the room to “look at some numbers” and then come back. Ten minutes or so later, my doctor entered the room, and began to share the news about our little boy that will forever change the course of our lives, or at least what we thought the course of our lives was going to be.  She shared with us that from what they could tell our baby had several things wrong with him. They saw some major developmental issues with the brain, the heart, the stomach, and several other physical features of our baby.  At that point, we began to weep and pray, but we still couldn’t quite yet grasp the magnitude of the situation.  By God’s grace, we were able to walk down the hall and immediately see a specialist to get some more answers and a better look at what was going on.  After a very long sonogram the specialist confirmed what the technician and my doctor had seen.  Our little boy has several major developmental abnormalities, including parts of the brain that are underdeveloped and parts of the brain that seem to be missing altogether, a heart with only two chambers (instead of the normal four), a stomach that is not completely formed in one area, and several other issues with our baby’s facial development, eyes, and hands.  At this point, we just wept. We held each other and we wept. Nothing could have ever prepared us for the situation that we were now facing. Nothing.
They were able to test the amniotic fluid surrounding our baby and discover that these problems have been caused by a condition called Trisomy 13, also called Patau Syndrome. Trisomy 13 is a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies. This syndrome causes multiple abnormalities to the baby and is considered “incompatible with life”.
So, where do we go from here? We know that from the world's perspective our baby is badly broken and is “incompatible with life”, but we know that from our Heavenly Father’s perspective that though our baby’s body may be badly broken, our baby’s soul is not broken. We know that our baby has life right now, even if only for a short time. He has a strong heartbeat and I can feel his movements in my tummy every day, even Warren has been able to feel them a few times now. So, though the outlook for our baby’s future on this Earth may not be good, we have decided to carry him until the Lord decides to take him home. We want to be the best parents we can be and enjoy each moment while he is with us today. The best way we can do that is to carry him, to love him, to pray for him, and to trust his precious life to our God: our God who knit this little boy together in my womb just the way that he is, our God that loves this little boy more than we will ever be able to love him, our God that is good, our God that is loving, our God that is faithful, our God that works all things together for good to those who love Him.  We will lean not on our own understanding, because we cannot understand. But we can trust.  We will continue to walk with our God each day and we will trust. We will trust Him with this precious life in me and we will know that we will not be walking alone. 
Our doctor says there is a good chance that our little boy will not make it to full term, but there is a slim chance that he might. So, we have no way of knowing how many more days he will be with us. It could be a week, a month, or all the way until he is due in April. We believe in a God that can perform miracles, a God that can heal. We don’t doubt for a second that God could heal our little boy completely if that is in His will and a part of His plan for our lives. So, we will pray for our little boy, we will have faith in our God and lean on Him, and we will lean on each of you as you walk through this with us.
We have already been so blessed by each one of your prayers, e-mails, and text messages. We cannot do this alone and we are so thankful for each one of you. Please continue to pray for us, love on us, and encourage us. We are going to need your love, prayers, and support as we face the journey ahead of us.
We have named our little boy Timothy David. Timothy means honoring God and David means beloved. We know that Timothy’s short life is going to bring honor to God and he is dearly loved by us and all of you.

We Love You All,
Julie & Warren

1 comment:

  1. My daughter, Shiloh Mercy, had Trisomy 8 and my second baby, Gideon True, had Trisomy 13. When the doctor told me that they were "incompatible with life" I told her that they were "more compatible with heaven". Please know I'm praying for you guys and your precious son, who is a beautiful precious miracle of God.

    Charis Johnson (A friend of Katie Morris)