You never said we’d ne’er feel pain. Christ crucified is Glory gained.
Not one, but two of my relatives have known the hardship of having a child diagnosed with Trisomy-18 (“Edwards Syndrome”).
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair, an extra chromosome 18 results (a triple) in the developing baby and disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth. A Trisomy 18 error occurs in about 1 out of every 2500 pregnancies in the United States, about in about 1 in 6000 live births. The numbers of total births is much higher because it includes significant numbers of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with more medical complications that are more potentially life-threatening in the early months and years of life. Studies have shown that only 50% of babies who are carried to term will be born alive, and baby girls will have higher rates of live birth than baby boys.
But they’ve both also known the joy.
First, the clone,
We had a boy, but he had Edwards Syndrome (also known as Trisomy 18). Edwards Syndrome is a chromosomal condition where an extra copy of the 18th chromosome is present in many cells of the body. Later results would show that our son had a full Trisomy, which means that the genetic error occured on the first division of the newly fertilised cell, so every single cell in his body was corrupted.
The bottom line is that a full Trisomy 18 is fatal. Over half of Edwards children don’t make it to birth and for those that do the life expectancy is not even in days, but hours. In the light of this we were offered (in a professional and non-judgemental fashion) a termination, but as parents who trust Jesus and who believe in God’s sovereignty over our life and death, after checking that there was no danger to Gayle if we continued the pregnancy we decided to carry our son for as long as it took.
So as August closed we named our new boy Zachary Andreas (“God has remembered”, “Man”) and began the journey of preparing to give him life and watch him die. To say that the last five weeks have been hard would be an understatement. We have cried and cried. We have had good days but we have also had terrible nights yet throughout it all, even at the hardest moments, we have somehow known God’s presence and that we made the right choice in choosing to go through this time of suffering.
Zachary Andreas passed from this world to the next around 18 weeks of pregnancy. Around the same moment of his life that my somewhat-distant cousin by marriage (I’m not going to even pretend to try and describe the exact “removed” and “2nd/3rd cousin” stuff), Pira, and his wife Venus were discovering similar news,
In early March, at 20 weeks of pregnancy, we learned that the baby inside Venus was going to be a girl! We had also learned that she would have difficulty growing physically and cognitively because of a chromosomal condition called Trisomy 18.
We were surprised, and shocked, and saddened, and confused. But we knew that this life inside of Venus was our daughter. She was not just a piece of tissue, but a living soul, loved by her Heavenly Father, and as her parents we were committed to caring for her as best as we knew how.
We began to pray that God would sustain us and grant us faith.
Little Fia Jae miraculously made it to term,
Just 4 days before her expected due date, Venus went into labor and our baby girl was delivered at Redwood City Kaiser at 6:08am in the morning. She weighed just 2.86 pounds and was 14 inches long. Her tiny body was delivered into the skilled hands of a physician, while her beautiful soul was delivered into the arms of THE GREAT PHYSICIAN, our Savior Jesus Christ that very morning as well.
I wonder how you would respond? It is perhaps our response to suffering and tragedy that marks Christians out from the rest of the world. Here is no mere Stoicism or simple surrender to kismet/karma or nothing at all. I’ll let them explain. First, Peter,
So what was the purpose of Zachary’s life? Well at the moment two things stand clearly out. Firstly, I am understanding to a much greater extent what Paul means when he says “that I may know him andthe power of his resurrection, and may share his sufferings, becoming like him in his death” (Phil 3:10). Gayle and I chose to suffer, to embrace the pain of carrying Zachary knowing that he would die, plunging further and further each week into a grief as to his future. We chose to so that in the knowledge that only God’s strength would see us through it. And you know what? It did. He did. These past two months, though painful (and the pain has not gone) have strengthened our trust in a God who has returned our trust in him with a deeper sense of his love. I enjoy God more than I did three months ago – he is my rock and my fortress and my joy.
Secondly I am very clear that we glorified God in the choices we made around Zachary’s life. In the decisions we made to carry him and to embrace the suffering that that entailed I believe we brought glory to God. In the five weeks from diagnosis to death we never blamed God (we still don’t) and we chose to live his Word, even though that prolonged the agony. We pray that somehow that will be a witness to others, that through our acknowledgement of his sovereignty over Zachary’s life and death he will be glorified.
and then Pira, in a sermon he preached as his church gathered to remember Fia Jae,
Here in America, we can pursue many noble and diverse things like light or “wisdom”, glory or “fame”, knowledge or “enlightenment”, goals that in and of themselves are good. But only in the face of Jesus are we able to discover the culmination of every pursuit. Jesus transcends every culture and human pursuit.
2Cor. 4:7 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed.
Jars of clay? Earthenware. Paul tells his audience that the treasure of Jesus Christ is contained in ordinary vessels — jars of clay. And the reason such a priceless treasure is entrusted to such simple items like clay jars is to show beyond a shadow of a doubt that God’s all surpassing power is at work, and it is not at all the work of men. God gets the glory when his ordinary people simply trust and treasure Jesus in the midst of the hardest pressures, the most crushing circumstances, the most difficult trials. And God never abandons his faithful ones.
18. It’s a helpful number in all of this. It’s the chromosome doubled up in Edwards Syndrome, but it’s also the normal age of maturity and what I’m outlining here are 2 mature responses to the curse of Trisomy 18, indeed to any suffering. Did you spot the common theme? The response centres not upon the pain of loss (although it doesn’t in any way ignore it) but seeks to understand it within the framework of a wider understanding of how everything works.
And that mature wider understanding can be summed up as “God gets the glory”. Pira, who with his wife Venus wrote the song embedded above, again,
It is strange to think that God could be glorified this way or that we could benefit from such sadness, but as we have shared the story of Fia Jae with others, people have reached out to us about how they were encouraged to trust God more.
2Cor. 4:16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
Paul tells the Church — don’t give up! Don’t stop believing. Don’t lose heart. SURE, this life is hard, but it’s just a light and momentary trouble compared to what’s in store in eternity. Every day there are things that break us and batter us, but inside of you is the treasure of Jesus. Inside of you is the Holy Spirit who makes you a new Creation. You are being renewed daily with new mercies, new life. And the eternal glory of GOD is going to blow us away someday if we just don’t lose heart!
This glory is, the Scriptures tell us, fully revealed at the return of Jesus and the Resurrection of the Dead (Rom. 8:17-21). And, as evidenced here, it calls us to call out to others to share in that same glory. It is one thing, at the birth of your child, to point to another greater child (as Zechariah does Luke 1:68-79) but another even more mature thing to contemplate the death of your child and point to that same One rather than simply (but understandably) to dwell in our grief.
Psalm 139:18 I awake, and I am still with you
The victory is the resurrection and perfection of all those who are saved. The victory is the triumph over Sheol, over the darkness, over the raging of the night, over death and all that evil can throw at us. Christ is the first who though clothed in darkness and as far from the Father as can be, awakes, and is not just still with him but now gloriously close to him, seated at his right hand. You and I too, if we accept Christ as our saviour will be counted with him, sharing in that glorious inheritance. And so also we pray will Zachary, he who unlike most humans spent his entire mortality clothed in darkness, but at the same time smothered in intimacy. Now, like so many others, he sleeps in Sheol, awaiting that day when his first ever words will not be “Mama” or “Papa” but “I awake, and I am still with you”.
Rest eternal grant to him O Lord, and let light perpetual shine upon him. May he rest in peace, and rise in glory. Amen.