Though our son never breathed outside the womb, his life was worth living
January 11, 2011 (Unmaskingchoice.ca) - I will never forget the joy and thankfulness I felt when I got the call telling me that I was pregnant.
Other than feeling extremely nauseous and tired, my first trimester went well. I had my first ultrasound at twelve weeks and was extremely thankful to see that everything looked perfect with our baby.
On November 13, 2002, I was scheduled for my twenty-week ultrasound. My husband Dave had been unable to attend any of my previous doctor’s appointments or ultrasounds so he took the day off and we decided to take our daughter Jasey with us as well, to give her a first look at the new baby. We were blissfully unaware of the tragic news we would receive and we didn’t even think to be concerned that anything could be wrong.
The technician began the ultrasound. After a couple of minutes she murmured that there wasn’t very much amniotic fluid. I ignorantly asked if that was bad. She continued moving the wand around my belly and without looking at me she said, “I’ll have the doctor come in and talk to you when I’m finished here.” I remember the sick feeling in my stomach as Dave and I looked at each other anxiously. She did her best to make the rest of the ultrasound seem normal as she measured various body parts and pointed out the head and perfect little hands and feet. We tried to concentrate, but our minds were racing, trying to imagine what could be wrong. When she’d finished she told us the doctor would be in to talk to us shortly. Fearing the worst, I asked Dave to take Jasey into the waiting room while I waited for the doctor.
The doctor came in and his first words were “I’m so sorry.” I immediately began to cry, but tried to compose myself while he told me that I had a dangerously low amount of amniotic fluid surrounding the baby and I would have to go for a more detailed ultrasound at Swedish Hospital in Seattle. I asked what caused this, and he told me that our child’s kidneys hadn’t developed properly. This condition is known as “Potter’s Syndrome.” In a normal pregnancy, the baby swallows the amniotic fluid, urinates it out again, and keeps replenishing the supply. When there isn’t enough fluid, the baby’s lungs also don’t develop normally. When I asked what that meant for our baby, he said he didn’t want to say too much: But generally, these babies were not compatible with life.
There are no words to describe the devastation I felt when he said those words. I didn’t care who heard me crying as I got dressed and ready to tell Dave that the baby we already loved so much was going to die. I don’t remember much about the meeting with the doctor, but one thing stands out: That one of the first things he said was that in a case like this we should think about terminating the pregnancy. We didn’t hesitate, and told him we would never even consider that, since we believe only God can create life and only He has the right to end life. It was like a slap in our faces to hear that since our baby would probably not be able to live outside my womb; his life had no more value. Dave and I cried the whole way home. We dreaded making the calls to our families because telling them made it even more real. Everyone was devastated. We spent hours on the internet trying to find something that would offer us even a little hope, but everything we read only confirmed what the doctor had told us. Our baby would likely be stillborn or at the most, survive a few hours.
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On November 20th, we had our appointment at Swedish Hospital. We hoped that maybe the state of the art ultrasound machines would show that miraculously there was a normal amount of fluid, but the news was no more hopeful this time. We asked if the technician could tell us if our baby was a boy or girl, and she said that there wasn’t enough amniotic fluid for her to get a good look, but since about 80% of babies with Potter’s Syndrome are boys, there was a good chance it was a boy. We had felt all along that this baby was a boy and had chosen the name David John, after Dave and his father. After the ultrasound, we met with a genetic counsellor who kindly but bluntly told us that our baby had 0% chance of survival outside the womb. He told us he was required to let us know that termination of the pregnancy was an option, but once again we said that was not even an option in our minds. He said that it was likely that in the next eight weeks, our baby would die. What a grim prediction. The unknown felt terrifying. When we asked if our baby was in any pain, he told us that David was completely safe and pain-free inside my womb, which gave us some small comfort. To imagine that our baby would have to die soon was awful, but to think that he was in pain would have added to the anguish we already felt.
At my next doctor’s appointment, I had the same doctor who had seen me on the day of my ultrasound and when he came into the room, he looked puzzled and asked me what I was here for. When I told him I was there for my prenatal check-up, he said, “What for? You do know your baby isn’t going to survive, right?” I felt like I’d been kicked in the stomach but asked if he would please let me listen to the baby’s heartbeat. He reluctantly did so and it was a relief to hear the sound of his heartbeat galloping. Because I knew we would most likely never get to see our baby alive, I treasured moments like these more than ever.
We begged God to heal him and spent a lot of time during the following months with our hands on my growing belly feeling our baby kick and squirm, and made sure that Jasey felt included in those times so he would feel real to her as well. We hoped and prayed that David knew how much we loved him and counted every day of my pregnancy as a blessing. That is not to say that it wasn’t an extremely difficult time! We struggled to accept God’s will, and although it is painful for me to admit now, there were times as I grew bigger and more uncomfortable that I wished for it all to be over.
My doctor continued to monitor my pregnancy as the weeks passed and he was surprised by the fact that David continued to grow and thrive. When I was about thirty-two weeks along in my pregnancy, he decided to send me to get another ultrasound at Swedish Hospital to see if there was any change in David’s development. I remember coming out of that doctor’s appointment feeling like everything had been turned upside down again. Was there reason to hope? We didn’t know, but anxiously awaited our appointment scheduled for February 21, 2003.
The night before my appointment, I brought Jasey to my mom’s house for the night. I didn’t know it then, but God was orchestrating everything for David’s arrival. I was barely home when my legs and back began to ache. The pain in my back grew increasingly intense and I remember asking Dave if he thought it was possible that I might be in labour. I looked up the symptoms of pre-term labour and it confirmed that I was indeed in labour. We were extremely nervous, but tried to get some sleep. Dave fell asleep but I tossed and turned from the pain and began shivering uncontrollably with fear and anxiety. After a couple of hours, I told Dave we should go to the hospital. It is hard to put into words the range of emotions we felt. On the one hand, we were terrified and filled with sorrow to think that our baby’s short life was coming to an end, but on the other hand we felt excitement to finally be meeting our son. What would he look like? Would he live for a short time? Both Dave and I prayed constantly for David’s precious life and soul to be spared and that we would be given the strength to face the most difficult time in our lives.
The following hours were a blur. The doctors ran blood work to try to find out why I had a fever of 103, and ordered different medications to try and stop my labour so that we could try to make our appointment at Swedish Hospital later that day. My labour couldn’t be stopped so my doctor decided to send me by ambulance to Seattle so we would be in a hospital with a NICU equipped to handle a baby with extensive handicaps in the possibility that he would survive his birth. My pain was unbearable and I begged for medication to take it away. I only vaguely remember most of that day since I was in a drug induced haze. When we arrived at Swedish Hospital, one last ultrasound was administered to see if anything had changed in David’s status but the results were the same as every other time. It seemed to be a cruel mistake as his heartbeat was still so strong and Dave still held onto one last shred of hope that God would still perform a miracle. At the very least we hoped that David would live for a short time, but as I had lost so much blood and was still running a high fever, the doctors strongly recommended that I deliver him naturally rather than have a C-section.
My family had arrived and went to the waiting room to await news of David’s birth. His delivery was long and very painful. He was breech and progress was slow. I vaguely remember one of the nurses turning off the heart monitor at some point and I asked if he was still alive. She listened carefully, and sadly shook her head. The sorrow was unbearable! What pain had he endured during his struggle to be born? At what moment had his heart stopped beating? It was so painful to think we had missed seeing him alive by moments. After he was born, one of our nurses cleaned him up and placed him into my arms. He was still warm and merely looked as though he was sleeping. Dave and I held him and kissed him with tears streaming down our faces. Then Dave went to call my family to meet our son. I will never forget the sound of my mom and sisters weeping as they came down the hall. It was such an awful moment, yet Dave and I felt such pride in our beautiful son and was so thankful to share him with our loved ones.
We held him for hours and told him how much we loved him. When it was finally time to let him go, it was so hard to let the nurse take him and put him in his little bassinet. I will never forget the moment when she pulled the sheet over his face as she prepared to leave our room. It was such a brutal reality: Our son was dead.
We were so thankful that we had our precious little girl to hold when we got home. Her innocent chatter and affectionate nature was the best medicine for the awful sadness of the following days and months.
To this day we have regrets about the short time we spent with David. I wish I hadn’t been so drugged, that I could have experienced that time with more clarity. I wish I had held him longer, and that Jasey could have met her baby brother. I wish I could have had him closer to home so more family and friends could have come to see him, but the one thing I will NEVER regret is that we chose not to end his life. He was our son, loved and longed for, and his life, although short, has touched our lives and the lives of our family and closest friends unforgettably. However short, his life was truly worth living.
Reprinted with Permission from Unmaskingchoice.ca