Your baby will not survive...

By Jon and Laura | November 30, 2018

Jon and Laura waiting nervously for the birth of Ethan with his arthrogryposis

“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 pregnant. 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 to 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 angonizingly slowly. At our first scan we nervously watched but released a huge sigh of relief as we were told that our babies 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 us 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. Arthrogryposis is a broad condition and people can live with it, but our baby was so severe at such a young age that survival was not a possibility. Taking aside from the fact our babies arms and legs were in fixed, unmoving positions, the baby would not build up the strength in their lungs in order to help them breath 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, but also explained 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. Abortion was something that we both felt strongly about and couldn’t understand how it was something we were even considering. 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 heartbreaking silence.

As we walked through the front door our house felt so empty but were quickly surrounded by friends and family. We prayed and worshiped our God which set the scene for the months ahead.

We quickly realized, 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 for a miracle.

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 babies 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”.

It was the most challenging of times. We would spend our times between growing in faith and expecting to see a miracle at the the next scan. Every time, the scan showed little in signs of encouragement and we had to learn to cling onto the truth that we had a good God. It was the hardest thing to do.

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 family, friends and church. We really believe that God gave us the strength to stand strong and the peace to continue with our lives.

As we approached the birth we could see signs of fetal breathing, and our hope started to rise. Ethan came on his due date, 16th November. He was whisked into the corner of the room while 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 his limbs did not even cross our minds. 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 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.

As Christians, 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 what we can only explain as an amazing miracle. What an honour it is to hold our son, watch him grow up. And his condition? Watch this space…

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