"Though He Be But Little, He is Fierce ... " A Parent Reflects on Baby Born with Terminal Disease
Jan 2, 2017
Updated Jul 13, 2023
5 min read
When we found out we were expecting our 5th child we were living in California’s Inland Empire, because my husband Zack was a 3rd year medical student. The day finally arrived to find out the gender. It was a boy and were going to name him Quinn. His name was already picked out for him because we wanted to name our 4th (a boy too) Quinn but his older siblings insisted his name was definitely Nicholas. We compromised and saved the name Quinn for the next one - which was only 15 months later. Upon finding out the gender, Zack left to pick up our daughter at school and I stayed for the rest of the exam. The nurse soon left to consult the doctor and double check the findings - his bones were measuring extremely small. My first thought was “who cares, I’m small.” However, the doctor was talking about a different kind of small. He recommend that we abort and “try again,” but that wasn’t an option for us.
I left with a heavy heart to tell my husband. What I didn’t realize was that Quinn’s physical features were identical to Zack's brother, Alexander, who had died 26 years earlier of a rare disease called Rhizomelic Chondrodysplasia Punctata (RCDP). Alexander lived valiantly for 36 hours. We took our findings to the doctor and he told us this was impossible, RCDP is autosomal recessive (meaning both parents have to carry the disordered gene). Zack’s parents were more likely to win the lottery 7 times than conceive a baby with RCDP, and for us to have one a generation apart would be simply impossible. We decided to research other possible causes.
We needed to be close to family at this time and miraculously got permission from Zack’s school to transfer back home for his third year rotation. Shortly after returning to Idaho I made my first doctor appointments. I was eventually referred to the University of Utah and the Utah Fetal Center at Primary Children's Hospital to see Dr. Janice Byrne, as she is an expert in Skeletal Dysplasia. She and her team were able to confirm Quinn’s diagnosis of RCDP in one visit. We also were informed that Quinn’s lung capacity was measuring very small and his chance of survival after birth was highly unlikely. This of course was unexpected news to us. I dropped my head and bit my lip to hold back tears. When I looked up at Dr. Byrne to make sure I heard her correctly, she along with her assistant had tears in their eyes. I knew they were telling the truth but I also knew that they cared about us and would do their best to take care of us. We knew we were in good hands.
We went home and began planning for a funeral, but little did we know that was not in Quinn’s or our Heavenly Father’s plans. Quinn was born June 23, 2016 at University Hospital. He was born blue, but crying and we knew his fight wasn’t over. He is nothing short of a miracle, and we are grateful for every day we have with him.
Quinn is now almost 4 months old and no longer requires oxygen supplements. He has had congenital cataracts removed in each eye and wears the cutest glasses ever. He also has moderate hearing loss, but recently received hearing aids and we love that he can interact with us. He will probably always be newborn size but as Shakespeare said, “Though he be but little, he is fierce.”
Caring for a terminally ill child has taught me several important things: service, joy, love, and hope.
At the time we were unable to find a diagnosis for Quinn, we lived in an area with a homeless man that lived out of his car. His name was Kenny. The kids and I started preparing meals for him and would drop them off a couple times a week as we went to and from the school. Although this did not fix Quinn, I was able to see and feel love through the service we gave to this man. It helped me look outward, and stop focusing on the pain I was feeling and see that others too are suffering.
One way that I have learned to find happiness, is through gratitude. I have tried so hard to find joy in our journey with Quinn. I have found that if I focus on the gratitude that I have that he is still with us, I am able to move forward and be filled with love.
While we are waiting for better days to come there is always hope and hope is everything. Hope for better days enables us to find joy and love every day, despite the darkness. We recently planted a tree for Quinn right next to where we will bury him (which is next to Zack’s brother, Alexander, that died of the same disease 26 years ago). Our hope is that this tree will be a reminder of the love and joyful memories we had with Quinn - especially during the dark days.
Until that day comes, however, we are enjoying Quinn and visit his tree and Alexander often. Quinn’s life thus far has been hard, but it has also been rewarding. Our hope is that he is able to inspire those around him to continue to fight their own battles.
We have created a FB page for him “QB” and invite you to follow his journey.