What is the measure of a life? I have watched a very dear friend travel a painful journey through the pregnancy, birth, life and death of her second son, Reuben. Kristy and her husband Luke have an inexplicable peace around Reuben’s 34-week life within the womb and 55-minute life outside. Here, for the first instalment of This Little Life, Kristy shares his story (also posted at Emily’s Voice).
“Reuben Edric Dadson decided to arrive at 1:55am on the 19th March 2013 after 34 weeks of life inside. He was born naturally and quickly and the midwife lifted him straight up onto my chest. The room filled with a warmth that I had only experienced one other time, at the birth of our first son less than two years before.
Reuben lay peacefully, his sticky warm body quivering every so often. He made a few little noises, but didn’t cry as most newborn babies do. Luke, my husband, was lying next to me on the hospital bed, one arm around me, the other touching Reuben’s little face and body every so often. I felt Reuben’s heart beating under my fingers. We told him we loved him, we kissed him, and I said, “Oh darling, you poor little thing”.
He weighed just 3 pounds 8 oz. He had beautiful plump little hands, long fingers with fingernails shaped just like mine. He had dark hair with a slight curl. His chest was small, his abdomen enlarged, his perfect little ears pinned close to his head. His tiny feet were turned on their heels and his nose was squished like he’d just been in a boxing match. Nobody tried to take him from us. His slowing heartbeat wasn’t a concern to the medical staff. His appearance was not a shock to anyone in the room. There were no tears, no panic, we had 55 minutes of life outside the womb with our second son and they were perfect. Those 55 minutes made it all worth it. The journey to that point had been long and hard, but I wouldn’t change it for a second.
It all began 7 ½ months before. Luke and I were so excited when we found out we were pregnant with our second baby. Our son Levi, who was 14 months old at the time, was going to be a big brother. My first pregnancy and birth had been a great experience. We were blessed with a non-eventful pregnancy and a healthy baby boy, full of life. So we thought that all would be the same for this new little one.
We went for a 12-week scan, with my main concern being that I might be having twins! We were unaware at that scan that our baby was already showing symptoms of the condition that would take his life. I remember the young lady doing the scan kept saying to Luke and I, “I’ll send your results to your GP.” At the time I thought she was a little strange – she told us at least three or four times. I now know why she kept saying this.
There was a mix-up with my contact details at the GPs office, so I was 13 ½ weeks when we received a letter in the mail explaining that the scan had shown up an abnormality with our baby’s bladder. I remember holding my breath. Luke was giving Levi a bath at the time. I stared at the letter, no words would come out. I finally called out to Luke, he came out with Levi wrapped in a towel. I said, “Luke, there’s something wrong with our baby”.
It was a suspected case of Posterial Urethral Valve, or PUV. Straight away I Googled it and found that it is an obstructive development anomaly in the urethra of male newborns. So basically, the valve that releases the urine from the body is either partially or fully blocked causing it to build up in his bladder. This is a condition that effects 1 in 8,000 babies and is only found in boys. I learnt that the baby often requires surgery after he is born to rectify the problem with severe cases ending in fatality. I held onto the hope that our baby’s case wasn’t a severe one.
We were referred to a specialist in Launceston, who completed a more thorough scan. That scan was very traumatic. Watching the faces of the two women examining our baby broke our hearts. The concerned looks, the shaking of their heads, the comments about low levels of amniotic fluid, little or no lung development, the list went on. We went back to our GP and she told us the crushing news that our baby was not expected to survive.
The drive to my friend’s house to pick up Levi was devastating. Luke and I both cried like never before. I remember feeling so confused, so overwhelmed, I couldn’t believe that it was all happening. I was now 16 weeks pregnant and had been feeling our little boy kick and wriggle for a few weeks.
We were so in love with him.
We were then sent to have an amniocentesis at the hospital. This is a specialised test that involves using a needle to take a sample of amniotic fluid, which contains the baby’s cells, from my womb and examining it in the laboratory to see whether our baby had certain serious abnormalities. It is a diagnostic test, which means that it could tell us with almost complete certainty whether or not our baby had certain conditions, such as chromosomal abnormalities. These tests surprisingly came back all clear. Our baby didn’t have a chromosomal abnormality, so his condition was not genetic.
Next, we were sent to an obstetrician at the Launceston General Hospital who explained that we really only had two options in his experience; to terminate the pregnancy or to let nature run its course. We told him that we didn’t wish to terminate and asked him if any other patients whose baby had the same condition and diagnosis had chosen to continue.
He said no. He said that all had chosen to terminate.
The obstetrician’s experience was limited in this area, however, and he recommended we travel to Melbourne to talk to a specialist.
These weeks of tests, doctors, scans and uncertainty were the hardest of my life. I struggled to get out of bed, I cried every day. We were loved and supported beyond the call of duty by our family, friends and church community. Meals were dropped off, messages were sent, we were really loved. Everyone was praying for us and our little boy.
Termination was never an option for us, but I would sometimes wonder if it would have been easier to end the pregnancy. We’d know the day this would all be over, we wouldn’t have to endure the months of waiting, praying and hoping for a miracle but planning for the worst. There were so many unknowns; would our baby be born alive or dead, would I be able to deliver him naturally, would he survive for long, if at all, and the biggest one, would we get our miracle?
It was after a conversation with one of our Pastors that we decided to name our baby. We were all praying constantly for him, and giving him a name just seemed right. We decided on Reuben, and Edric as his middle name; a family name.
Naming Reuben was the best thing for us. He was our baby, he had a name, he was loved by many, although no one had met him yet.
At 18 weeks, we travelled to Melbourne to the Royal Women’s hospital. We had more scans and appointments, but it was found that there was nothing medically that could be done. I didn’t realise how important amniotic fluid is. Babies need to be constantly breathing it in, drinking it, digesting it and releasing it for their lungs, kidneys and digestive systems to develop.
When back in Launceston, we met again with the obstetrician. He asked us about the details of our appointments in Melbourne. He then asked a question I will never forget, “Why are you choosing to continue with this pregnancy?” He seemed genuinely confused. Why would we continue, when it was a medical certainty that our baby wouldn’t survive? He also said, “You know you can change your mind at any time? Babies with this diagnosis can be terminated at any stage.”
His question and statements bought me to tears. I explained that we loved this baby, I could feel him move and kick, he was real and very much alive. We didn’t think that it was our choice when his life should end and that even if we only had five minutes with him, we would cherish it. He didn’t seem to understand, and this really made me pity him. I would often pray for him, hoping that our story might change his perspective.
We had one more trip to Melbourne to explore the possibility of a shunt to drain the fluid from Reuben’s bladder, but his case was too severe and the success rate of the procedure is low, even on babies with less severe cases of PUV. The specialist we saw on this trip was amazing. She referred to Reuben as a baby, she said she respected our choice and that in actual fact we had chosen the best path for our baby. He was not in pain, he was safe and comfortable in the womb, his condition just meant that his lungs and his kidneys wouldn’t develop enough for him to survive outside the womb. She told us of other women who had made the same choice as us and how those babies had a distinct look about them, a cuteness she couldn’t explain. We went away from that appointment feeling empowered in a way. We knew that we had done all we could and now it was up to God.
We prayed constantly for a miracle and I still believe today that God could have healed Reuben, but that wasn’t His plan. I enjoyed my pregnancy as much as I could. I wore things that would show off my baby bump. I delighted in each bout of hiccups or crazy kicking session. I asked close family and friends if they wanted to feel Reuben kick, and 99% of the time he would happily comply and give the waiting hand a little boot! He had character before he was born. I really felt like Reuben was a strong little soul.
It was early on that God gave me a revelation that Luke and I still hold onto. I felt He told me that He had chosen us to be Reuben’s parents. I didn’t need to question, ‘Why us?’, or, ‘Why has this happened to our baby?’, but I knew that God had trusted us with him.
At Reuben’s funeral, our pastor said something that really stuck in my mind. In the picture of eternity, our lives are just a flash in the pan. Reuben’s life on this earth was so short, but it had a purpose. He will always be loved and never forgotten. I have had the opportunity to share with so many people about our experience and explain that although tragic and so very sad, it was beautiful and has changed our lives for the better forever.
I spoke recently with a mother whose baby was diagnosed with the same condition as Reuben. She seemed confused when I told her that I didn’t deliver him until 34 weeks. She asked me, “Why did they let you go that long?” She then shared the story of her induction and labour at 22 weeks. Even though it had been quite some years ago, the pain, grief and trauma were still very raw for her. I told her I could tell how much she loved her baby and that I was so sorry. Her story made me wonder if she was presented with the option of continuing her pregnancy, and not just as a side note, but as a real option.
I was able to spend time with Reuben. After he passed away we spent two days with him. I wanted to try and do as much as I could as his mother in that short time. I shared him with close family and friends, I bathed him, I dressed him, I sang to him, I read him stories, I rocked him, I kissed him, I snuggled him close, I let his brother poke him and wheel him around the room in his crib.
I really believe that this time we had with him and God’s amazing grace is why we feel so at peace about it all and that we are ok. Although it was not as we had hoped and prayed for, we got our miracle. Reuben lived, was loved and has made a difference in this life and I am proud that God chose me to be his Mum.”