“Your baby is very poorly and will not survive past birth”.
It is hard to convey the joy and excitement we felt when we found out we were expecting a baby. It had been a long journey for us – a story for another time – but to know that we were soon to have a new member in our little family was something we had only been able to dream about. Those first 12 weeks of nervous excitement, as you wait for that first scan, passed by agonizingly slowly. At our first scan, we nervously watched but released a huge sigh of relief as we were told that our baby’s heart was beating, and they turned on the monitor for us to see our baby. But the gloss was slightly taken off when the nurse told us she was a little concerned that our baby had clubfoot, so referred us to a specialist to do a second scan.
A week or so later, the specialist consultant scanned again and spoke words that no parent would ever want to hear. We were told that our baby was very poorly, and would not survive past birth. In the words of our doctor, the condition was fatal. Our baby had a condition called Arthrogryposis. This is a broad condition which people can live with, but our baby was so severely affected at such a young age, that it seemed that survival was not a possibility. Taking aside from the fact our baby’s arms and legs were in fixed, unmoving positions, we were told that the baby would not build up enough strength in the lungs in order to function outside of the womb.
As we were told this, it felt like the world was crumbling underneath our feet. From such joy, to utter despair. Our consultant then advised us to terminate the pregnancy, but also explained that they would support us if we were to see the pregnancy through. We were moved to a small side room, so that we could grieve and try to come to terms with everything we were just told. We were guided out of the hospital through the back so that we didn’t have to see other babies or pregnant mums, and drove home in broken-hearted silence. We simply couldn’t comprehend how we were in a position where we were advised to abort our baby.
As we walked through the front door, our house felt so empty but we were quickly surrounded by friends and family. That evening, Luke and Claire Christian-Farman [Worship pastor of Chanctonbury Churches], who themselves have suffered such heartbreak, came over, and as we sat in our conservatory, Luke led us in some worship as we sang of God’s goodness. This set the scene for the months ahead.
We quickly realized that the decision was easy. We had no idea how we would navigate the months ahead, but it was our chance to stand in faith and trust in Him. We have huge respect for the doctors and nurses who looked after us, but we knew that we had a God who could heal our baby.
Having not wanted to know the sex of our baby, we found ourselves so desperate to know. We asked at every subsequent scan (of which there were many), but because of the ‘unnatural’ position of our baby’s limbs, they could never get a good clear sight. As part of an investigation, we had an amniocentesis, and from that they were able to tell us the sex of our baby. “It’s a boy!” we were told. With excitement, we named him Ethan Jesse. Ethan means “strong, firm, long-lived” and Jesse means “gift”. We felt that every time people were to speak his name, that they would be declaring strength over him.
It was the most challenging of times. We would spend our times between appointments praying, worshipping and growing in faith. We went into scans with full expectation that our boy would have been completely healed. Every time, the scan showed little in terms of signs of encouragement, and we had to learn to cling on and declare the truth that God is good. It was not easy, and at times it felt like being on a battlefield of faith versus earthly reality.
So many times we have been asked how we were able to handle such a difficult time. There are so many reasons, from small acts of kindness, to being covered in love and prayer by our Church family. However, in that time, there is one thing that helped us more than anything. From that very first evening when Luke and Claire had come to worship with us, we learnt that giving God all the praise and glory, and singing of His goodness was our first priority. In some ways, it was such a privilege to be hurting and yet able to stand and declare that our God is good. In return, God gave us such strength and peace which truly did surpass all our understanding.
As we approached the birth, we could see signs of fetal breathing, and our hope started to rise! Ethan arrived on his due date – 16th November. He was whisked off into the corner of the room whilst we held each other, desperately listening for a first whimper or cry. It was the most beautiful sound we have heard… Our boy was breathing! Our boy who was medically not expected to survive, was alive! When he was brought back to us, he was wrapped up and the state of his limbs did not even cross our minds! We simply held him, thanking God for a miracle. It was a joy like none other we have ever felt.
As they unwrapped him, so that he could be weighed, the enormity of his condition struck us. His legs in particular were in almost impossible positions. They were crossed and his feet were up above his hips. His arms in a fixed straight position, with his hands tucked up. We had such overwhelming joy, but had a realization that we are still very early on in Ethan’s story. It was impossible not to feel confused. Why would God go to such lengths to save Ethan, but not fully restore him to perfect health? We can now look back at that time and reflect on the amazing miracle that we have had. What an honour it is to hold our son, and to watch him grow up. And his condition? We see it as a privilege to see what God will do as we chase the next miracle.
He is now 3 months old and every step of the way he is exceeding any expectations put upon him. God is continuing to heal him through the hands of the doctors, and we continue to pursue further supernatural intervention. What a privilege! What a God!
Every breath that Ethan takes is God’s victory. We are often asked if we are angry at the doctors for getting it wrong, and we can honestly say, ‘No! They didn’t get it wrong, they just didn’t account for God to intervene.’
Watch this space…
Jon, Laura and Ethan Carter live in Coolham. They have started a blog for Ethan’s journey: ethanjesse.co.uk