Sharing Riley’s Hope

Riley’s Hope begins with Kourtney and Chase; our children, our inspiration to have another child. Riley took six months to conceive. For six months I prayed, planned and dreamt for this child to enter our lives. I knew that our family was not complete without him; our hearts had an aching empty space waiting for Riley. Then it happened; finally Riley was on his way! 

Soon enough it was time for Riley’s routine 20-week ultrasound, I prayed now for an uneventful exam. The exam was anything but; there was concern about Riley’s brain. The examining perinatologist explained that there was fluid hiding Riley’s brain and most likely a shunt would be needed. He cautioned that there was a possibility that the fluid wasn’t hiding the brain but rather that there was no brain at all. The next step was to wait a week and return for an additional ultrasound to further clarify Riley’s condition.

I returned one week later, I waited for an hour, with a full bladder, surrounded by other pregnant women. I watched them leave with their baby’s first pictures, calling family and friends revealing their baby’s gender and sharing their joy. I sat wondering if my baby had a brain, praying it was just hydrocephalus. 

Finally it was my turn, a new doctor examined Riley, and she attempted to explain what she saw. Her English was not clear; the only thing I could understand was that something was wrong with Riley, termination was recommended. I needed to act fast and if I didn’t no one could help me. I called my OB for clarification. Very simply she said that Riley’s brain didn’t fully develop and that this may not be compatible with life. I asked why, I asked if she was sure. We agreed on an amniocentesis in hopes of answering these questions. 

Days later I returned. I waited another hour in that room watching more women come and go; laughing, smiling, carefree. It was my turn. The first examining doctor came in and probed at Riley again. The doctor scanned Riley and remarked at his “impressive” findings. I was offended at the fascination I saw on his face as he concluded that Riley did not have any structure within his skull. After the scanning was complete I was strongly encouraged to consider termination. The doctor explained that Riley’s prognosis was poor and that Riley was missing the part of the body that makes him a person. He explained that Riley was no different than a doorknob. I asked what if he was wrong, what if Riley did live? His response was even if Riley did live it would require great medical intervention only to exist as a vegetable. I was advised that this was our time to ‘get out of a bad situation’ and that ‘we don’t know what were getting ourselves into’. He continued that if Riley was capable of surviving birth we would be faced with ‘institutionalization’.

I was heartbroken. How could I do this? I prayed for this baby, I wanted this baby. It’s true I didn’t want this heartache, but would terminating Riley take away the heartache? I had always believed in life, but I didn’t feel this was a matter of my beliefs. What I heard the doctors explain was that terminating Riley was the best thing for Riley and my whole family. Of course I wanted what was best for Riley and my family, but how could electing to end Riley’s life be good for anyone? I have no medical training, how can I go against medical advice and continue this pregnancy? 

Again I went for another ultrasound, I wanted to see if a different doctor would have something of hope to say for Riley. I waited again - again a different doctor examined Riley, however he gave the same description: “impressive” he said. He explained that when a baby has an anomaly within the brain it’s of concern, when you find more than one anomaly it’s not an addition problem; it’s a multiplication problem. He continued that the complexities of Riley’s anatomy were just not compatible with life.

I didn’t know what was best for anyone anymore. It didn’t matter how any doctor tried to justify Riley’s termination, I knew if I chose to terminate Riley, I would know exactly how Riley died, not from a brain malformation but because Riley was not given the opportunity to live. My Ob came in next; I asked her what am I supposed to do? Who am I to go against what these doctors are telling me? Am I going to hurt more people by having Riley than if I terminated him? She had no answers, just a proposal. She proposed that I carried Riley to term, that I provide him with every natural opportunity life offers all of us, that nothing invasive be done to Riley. She proposed following his lead, she proposed hoping and praying. 

So I went on with the pregnancy; alone, terrified, heartbroken. I was completely devastated. I expected Riley to never take a breath on his own. The pregnancy was not easy; I had so much I struggled to make sense of. I was in constant turmoil. If he’s going to die anyway am I a masochist torturing myself, and those around me, by prolonging the inevitable? I prayed no, that was not my intention. This was Riley’s life and it was ok not to interfere with his destiny. I concluded that the only thing that changed was Riley’s prognosis; his life still had purpose, regardless of the length of his life, regardless if he would ever take a breath. I resolved to give him the dignity and respect I desire in life. 

Riley’s presence began to bless our lives. I was amazed at the love our family felt for one another and for Riley. I was overcome by the unity he brought to our marriage. Riley gave my life clarity; suddenly complex problems that plagued my mind were trivial. Riley allowed me to live in the moment; I savored every day he grew inside of me knowing that this time was sacred. Riley gave us reason to discover the depths of our own souls, to know our abilities and to realize there are no limitations to love. Riley provided a truth and honesty in every relationship that we had, there was no more impressing or concern of offending anyone, only absolute sincerity. Riley enabled us to live guided by faith; having nothing more than faith to carry us we knew that there was a reason for our heartache. Riley showed me the power of acceptance. I would never question why Riley’s brain didn’t develop as anticipated; he was made exactly the way he was supposed to be. I was overcome by the power of his fragile life and I felt indebted to this little soul for such amazing gifts. 

Riley’s life continued after delivery. We were shocked when our little, blue, limp baby rooted after over 30 minutes of laying lifeless in our arms. There are no words to describe how happy we were; our hearts soared. Despite Riley’s strong reflexes, his MRI confirmed those prenatal consultations: Alobar Holoprosencephaly. Riley was a little miracle; only 3% of these babies are born alive and we were blessed with one. The hope that my OB gave, not that he would be cured, but that there was a possibility of a miracle in some form was now a reality. Riley, our living miracle, nursed effortlessly and was the perfect newborn, absolutely beautiful. 

Riley continued to grow and bless our lives for an additional 12 months. He managed many medical challenges with strength and grace, constantly reminding us that he had a will to live that defied life-threatening symptoms. Riley’s presence impacted everyone that heard of his life. He had people around the world praying for him, an entire community willing to help care for him, a family that adored him, appropriate medical care and community services that ensured that his life would continue with dignity and respect. Riley’s goodness was the gift he gave to anyone that learned of his existence. Riley provided everyone he encountered an opportunity to reveal kindness and compassion. He was a living example of purity and perfection. Without achieving any developmental gains, you could feel the power of his spirit simply by looking at his resting body. The influence Riley made was far more significant than anything that can be mastered by the human brain or body. He did not need a brain to live his life purpose, he only needed his spirit, which was always present, strong and whole. I’m not certain why Riley was given to me, why I was blessed with my own living angel. I am certain though, that he has redefined my life. I am forever changed, a different person because of Riley, I am whole in a way that I never knew I was empty. Everyone that learned of Riley is also changed by his life; his spirit will continue to live in their hearts. I am so proud of his accomplishments, I am so proud to be his mother. 

I smile at the blessings he gave, but I cringe at the horror of discovering Riley’s prognosis. I cried for six weeks straight. I lived in fear of what would come. The words of the perinatologist repeated over in my head continuously. I doubted myself constantly, I was so afraid that I should have listened to the doctors and that by not doing so I was being selfish and I was not doing what was best for Riley. I was disappointed in myself that I was to afraid to ask so many questions I wanted answers to. 

I know now that I did what was best for Riley. One thought still haunts me, what if I had listened to the perinatologist? If I had followed the doctors advise it would have been out of fear and loneliness. I needed support, someone that wasn’t afraid of my baby and was willing to walk by my side, someone that had been through what I was going through. I needed to be reminded that he was my baby and I was still allowed to love him. If I had been offered this support, I never would have questioned my desire to let Riley continue to live. The anxiety over what I was doing would have been eliminated; allowing me to better cope with the heartache. After all, it wasn’t continuing the pregnancy that caused the heartache; it was the fact that my baby was going to die. If I had terminated Riley, I still would have lost him and I would have also lost the opportunity to witness why this had happened. I would never be certain that he would have truly died on his own. I would have lost the opportunity to show him the dignity and respect he deserved. I would have lost the opportunity to hold him, smell him and kiss him. I would have deprived my children of their sibling and the respect they have for life. I would have missed out on the greatest soul of my life. Allowing Riley to die naturally gave Riley the opportunity to complete his life purpose; enabled me, and everyone, to receive Riley’s goodness and properly celebrate his life. Before conception when I dreamt of Riley, I had an aching emptiness in my heart; that is now gone. Riley is the baby our hearts longed for and we are now a complete family with Riley in it.

I am still troubled knowing there are women continuing to experience the pain, heartache and loneliness I endured. I do not want a woman to terminate her baby because of fear and loneliness. I do not want another woman to face this journey alone. I want to walk with her, to tell her it’s ok to love her baby and that her baby was made exactly the way it was supposed to be. I want her to know that someday her baby’s life’s purpose will be revealed, the value of life isn’t measured on an individual’s abilities or length of life and that the greatest accomplishments can be achieved by the smallest of lives. I want to support her through the explaining, the managing, and the planning. I want to help her celebrate the life that was given to her and I to hold her while she cries for the dreams that died with the prognosis. I want to love her baby with her and help her say goodbye when the time must come. I want to fill the gaps between good prenatal care and the unique emotions and needs that accompany being pregnant with an angel. I want to give her what I desperately needed through my pregnancy. I want to give her Riley’s Hope.

- Kelly

Kelly actively assists in perinatal hospice work. She is currently developing a program called "Riley's Hope" in conjunction with Kaleidescope Kid's Hospice at Henry Ford Hospital in Detroit, Michigan. If you are considering perinatal hospice and are in the Detroit area, please contact Kelly. To learn a bit more about Riley, please visit his CaringBridge site here.

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