A Fatal Condition

"... but God shows his love for us in that while we were still sinners, 

Christ died for us."

-Romans 5:8

On April 20, 2015, our precious daughter, Loran Ruth was diagnosed with a chromosomal disorder. It was later confirmed to be Trisomy 13, which is, medically speaking, a fatal condition. It is a rather rare syndrome and we have had many questions regarding what exactly this condition is and what it means, so I would like to take a minute to share the nature of our daughter's sickness.

Trisomy is a word that means a condition in which an additional chromosome is present in the nucleus of the cell. 

So, basically God's design for the creation and development of life is very specific: 46 chromosomes. In each cell of your body, you should possess a nucleus that has 23 pairs of chromosomes (46 in all). When a trisomy occurs, it means that one of there is an additional, 47th chromosome present. Most commonly it is either the 13th, 18th, or 21st chromosome that is repeated a third time. The pictures below show the difference.

In the picture above, you see a healthy set of chromosomes- each of the numbered pairs has two.

In this picture you can see by where the red arrow points that there are three small chromosomes above the number 13. This is called Trisomy 13- an extra 13th chromosome is present.

The question then becomes: What does this mean? How does it affect our baby?

Well, when a there are the wrong number of chromosomes present, this opens the door to all sorts of physical/developmental abnormalities. Basically, the baby's body won't develop in what is considered the "normal" way. The level of severity depends on which of the chromosomes is repeated. Trisomy 21 is also known as Down's Syndrome, and many people are able to live and function into adulthood with relatively minor disabilities and cognitive delay. Trisomy 18 and Trisomy 13, however, are considered fatal- 90% of babies with these extra chromosomes do not ever reach their first birthday. The physical disabilities are usually too severe for them to survive long-term, particularly with Trisomy 13. 

In our case, this syndrome has resulted in a hole in Loran's heart, a missing artery exiting and entering her heart, a missing connection between the cerebellum in her brain, additional fingers and toes, a cleft lip and palate and some other "minor" abnormalities. With so many physical challenges, the prognosis that we have received is that our sweet baby girl will not likely live for more than a few minutes or hours at best. 

Upon learning our diagnosis,  I researched and researched and researched and researched as much information as possible to make sure I had a thorough understanding of the condition that will eventually take the life of our daughter. The more I learned, the more my heart ached for my little girl, how broken she is, how helpless she is to fix herself, and how hopeless her condition is. 

And then the Lord so clearly showed me how very much we already have in common. How she is already so much like me.

Like Loran, I was born with a fatal condition. 

We both have a condition that began at the moment of conception, and one that is basic to our very nature. Both of our conditions result in abnormalities, deformities, that develop and reveal themselves over time, specifically in the heart. And in our state, though our deformities can be repaired, it will not heal the true nature of our condition. We are both are terminal and have one ultimate prognosis: death.

Loran's condition is physical- a chromosomal disorder. Mine is spiritual- sin. Hers leads to physical abnormalities, deformities of the heart and other vital organs. My sinful deformities, though at times less obvious because they are internal, are also of the heart, rooted in the deepest parts of my soul. Though we could attempt to "fix" these abnormalities, her birth defects, or my selfish and sinful behavior, those "repairs" wouldn't fix our true nature and would lead to the same end. Her death will be a physical one, separated from the love of her father and mother on this earth. My death would have been spiritual, separated from My Father for all eternity. 

BUT there is more: we both share one hope for redemption from our condition and we are both loved with a deep, steadfast love despite it. 

My only hope for salvation from my sin, from my fallen nature is in Christ- in the sacrifice He made on my behalf, in His conquering of death that results in His power to change not just my deformities, but my very nature- my heart. He is my ONLY hope. And Christ is our only hope for Loran as well- through Christ we have hope that God has a bigger plan than this condition, that He can bring good from her life and her death, that He will use every moment of her existence to glorify Himself in ways beyond what we can imagine.

And through that hope we can know love, true and steadfast love. I am loved by God- not that I first loved Him, but that He loved me and demonstrated His love for me by sending His Son to die on a cross as payment for the debt that I owed. Though I was broken and deformed, His love has made me beautiful. Because of Him, Craig and I are able to pour out that love on our little Loran- not that she loved us first, but that we love her. That despite her physical state of brokenness and deformity, it is through our love for her that she is made beautiful in our eyes :)

I am so thankful for the way that God's grace is made evident through all situations in life... He blessed me that day with a deeper understanding of who I am and who He is and how to love my precious daughter. We ask that you continue to pray for us as we struggle daily through the waves of grief- that we would hold onto that hope and believe in His love... thank you for being His light in our life.