Mothering Trisomy 18: God Made my Baby with Extra Chromosomes
"Oh for Grace to trust Him more."
This familiar line of an old hymn popped into my head a few days before I was scheduled for my cesarean with our third child, for whom we had chosen the name Jett. We chose this name because he was incredibly active in my womb, feisty and stubborn (breech, hence the cesarean). Jett fit him so well. Nothing was wrong the day this hymn popped into my head, but I was thinking how sweet it is to walk with the Lord and how much more I wanted to know Him. Hindsight now, I think this hymn was incredibly ironic, prophetic, .. coincidence if you will. On September 4th, after a football game on Friday night, my husband and I drove the hour drive at 5am to get to the hospital for our scheduled cesarean. It was my third child and first scheduled delivery, first cesarean. I was nervous, of course, but at peace.
"Tis so sweet to trust in Jesus"
Everything went routine and the delivery room was calm and chipper, as cesareans are fairly routine, and there were no known complications with our feisty Jett, aside from being IUGR, small in the 3rd percentile. Everything was fine until it wasn't. When they pulled him from me, they were calm, but something was clearly not right. There was no cry, and according to my husband, everything started happening very fast. My husband remembers being concerned. I remember worrying why he didn't cry, but being assured by the anesthesiologist. As they finished with me, and my husband went to check on Jett, everything to me was a blur.
In my room, I remember feeling calm, and just hoping to see Jett soon, I had never been separated from a baby at delivery before. When the pediatrician came in and explained there were more and more complications, but that he was intubated and stable, it was like in the war movies when a bomb goes off. Words like "respiratory failure" and "abnormalities", "recommend he be sent to Cook Children's for consult" "care flight is heading this way" "you can't go, but your husband can" ... these words all pinged in my ears but didn't stick. My whole life, I have loved and followed Jesus. My whole life, He has been my anchor. My life hasn't been perfect or easy. Jesus has always been constant. At this moment, Jesus gave us the gift of shock. As a Christian, Jesus gives not as the world gives, He gave me peace with my shock. Peace with my panic.
Everything in Jett's delivery was absolutely laying the foundation for God to show me His perfect faithfulness, a foundation I would need in 79 days.
In Fort Worth, On September 8th, in the ER at Texas Harris where I was having blood drawn for cultures to be diagnosed with sepsis (spoiler, I had sepsis), I received a phone call from Jett's NICU doctor. I answered every call whether I had the number or not, no matter where I was. It was the classic "are you sitting down? Can we have a discussion?" phone call. I just wanted her to tell me the results of the genetic testing we had done the night Jett arrived at Cook Children's, the night he was born.
"We have his results back, your son has full trisomy 18......"
Anything else after that was irrelevant. My husband had just driven the 5 hours back to Ozona to be with our big boys, and turned around and came back to Ft Worth. Days of uncertainty, days of vulnerability before our friends, family, and community, desperate for prayers. We had never needed prayers more than we did when we had to take Jett off the ventilator and get him to breath on his own on nasal cannula oxygen. Our town gathered and prayed. And God answered. "Tis so sweet to trust in Jesus".
From September 29th, to November 22nd, Jett lived his entire life surrounded by the love of his family, and the adoration and support of the community of Ozona. With Trisomy 18, many babies do not make it home. Many babies do not live a week, but with intervention and support, many babies DO live. Trisomy 18 is usually diagnosed in pregnancy, but for a variety of reasons (above my ability to explain but having to do with back-to-back same-gender pregnancies and maternal-fetal blood). Jett's trisomy did not show up on our genetic testing, no obvious signs of Trisomy 18 on ultrasounds, and not until confirmed by more in-depth genetic testing were we given the diagnosis.
From conception, Jett had this. It was nothing we did, it was just a genetic event in his embryonic state, that his 18th chromosome had three instead of two.
The most beautiful and gut-wrenching thing about our third son was that God created Jett with extra chromosomes.
We didn't know this. Doctors didn't diagnose this the way they usually do. Medical science is amazing and advanced, but God's plans are so much higher than what we can fathom. For some reason, for Jett's story, we couldn't know he had trisomy 18 until after birth. He, as well as all trisomy 18 babies, was incredibly marvelous, worthy of life, love, and perfect in our family.
We knew medically the outcomes are not painted in light with hope and joy; but parenting a child with a tough genetic diagnosis, having his brother's love on him, was truly my life's most beautiful and joyful work.
I honor his life by continuing to speak his name, his worth, and to advocate and educate all that will listen on the beautiful lives that medically complex children, specifically babies with trisomy 18 can have.
One thing we prayed when we began to start a family was that God would be glorified in our family. Everything about Jett points to God. He was not planned by us, he was a surprise. God knew Jett was coming into our family before we did, and God knew he was going to have trisomy 18. God knew the world needed Jett Nolan Taylor, exactly as he was. Jett was not diagnosed the conventional way. He was breech, when I tried so hard for him not to be, he was delivered via c-section. His breech position, in my opinion, saved him. Had we tried for induction with head down presentation, given his small size and unknown respiratory issues, I believe it would have been catastrophic for him. He thrived as a trisomy 18 baby, he had a purpose.
On November 22nd, the day that Jett's earthly body grew weary and was welcomed into Heaven, was a day my life entered a new phase. I often wondered before Jett.. how do people survive child loss. When we had Jett, I wondered, how would Jesus carry us, how would this feel, what would we feel. Our faith in Jesus has shown us the most beautiful perspective on Jett's life, and death. For 79 days, every breath we and Jett took. God was there. Every complication unknown, every bomb that went off in our lives, every trauma, God has been faithful. His faithfulness, His presence has never been more palpable to me. Losing Jett has been the ultimate most significant event in my life, it has changed me to the core. It will always be with me and I will always carry this grief.. but Jesus is with me, and carries it as well. My faith in God, my view of faith in general has catapulted me into the arms of Jesus, where every moment I need him, and every moment I trust that He is good.
We see our son's life, our story, and his story as one where joy and sorrow meet. Grief and gratitude. Sadness and rejoicing. I see a side of Jesus I have never seen before in this loss.
I see his mercy and I see that the well of compassion He has for us never ends. In this world, losing a child is possibly the worst thing you could endure as a parent. Everything about Jett's delivery and first weeks was traumatic to us, and Jesus carried us. In Jett's life, we see God's sovereignty, that God loves and creates children of all needs in His image, and that medically complex children are so worthy of our love because they are worthy of His image, they are His image-bearers as we all are. Jett, with trisomy 18, and all were made in His image. How has my faith changed by losing Jett? My faith has been given new eyes. Eyes that see deeper and more true parts of God's heart.
"The Lord is gracious and compassionate, slow to anger and abounding in love" Psalms 103:8.
Many people see God as angry, unfair, and ask Him why He allows bad things to happen. These are all very valid. However, when our son's body grew weary and when he died; God was with us in our grief. He continues to be with us. We know the compassion and steadfast love of God because we have walked through it in a way that would have destroyed us but for His grace.
So when I think back as to why that song popped into my head before Jett was born, and I look back on the 79 days we had with Jett, Oh for His grace, that I can trust Him more. That I can see Him more. It is truly SO sweet to trust in Jesus. We cling to Him and draw near to knowing Him more as we walk this side of grief. I hope through Jett's life, his beautiful life with trisomy 18, that all who know Jett will also look to Jesus and trust him more.
Click here to read more of our blogs about seeing God's sovereignty and faithfulness through losing a child. This blog was written by Laura Taylor in Ozona, Texas. She has been married to her husband Jarryd for ten years. Together, they have three boys - Jace, who is 4, Jones, who is 2, and Jett their youngest, in heaven.