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Courtney Hiller, Bereaved Mama to Luca shares their TFRM story

Experiencing pregnancy loss is one of the most painful things a parent can go through, and it can be difficult to know how to share the information with family and friends. Thank you to Courtney Hiller, co-chair of the Butterfly Run Kelowna, & bereaved Mama to Luca for sharing their story. 



This is the letter Courtney sent to out to family and friends, sharing about the birth and life of sweet baby Luca.


"To our beautiful family & friends

It is with great honour and unmistakable heartbreak that we announce the passing and delivery of our sweet, sweet baby boy, Luca.
 
On September 13th at 1:18 pm, Luca’s little soul travelled home to join his Poppa Emil and on September 15th at 6:58 pm, after 51 hours of labour, his beautiful tiny body was delivered into our world at BC Women’s Hospital in Vancouver.
 
At 23 weeks and 3 days, Luca was 4 days shy of his 6-month gestational milestone and weighed 1 pound 5 ounces, measuring 13.5 inches in length. He was beautiful in every possible way, from his perfect little nose right down to his big old feet. His proud Daddy cut his umbilical cord and we instantly fell head over heels in love with every inch of our beautiful son.
 
We could not have done what we did without the support and love of the hospital’s CARE team. My husband and I have them to thank for allowing us to see the beauty in this incredibly painful time. Thank you for being our soft landing and creating a sacred space for us to cry, swear, laugh, celebrate and experience Luca’s journey without shame or fear. Thank you for seeing our baby for what he is, beautifully perfect.
 
For those of you who do not know Luca’s story, during our 21-week ultrasound, it was found that our precious baby boy had serious and life-altering medical abnormalities.

Sweet Luca was diagnosed with the neural tube defect, Spina Bifida– Myelomeningocele which is the most serious form. Chiari Malformation – which was caused by the spinal cord pulling his brain down into his spinal canal, blocking off the natural flow of fluid from his brain down through the spinal canal, this condition caused severe Hydrocephalus which is fluid on the brain. This means his tiny spine did not properly seal in the first 28 days of pregnancy causing his spine to be exposed and spinal cord to grow into a bubble-like structure on his back.

Due to the spinal cord growing into this abnormal bubble, it pulled the back of his brain down into the top of his spinal canal. This then cuts off the flow of spinal fluid to and from the brain causing a severe buildup of fluid and compression on the brain. Spina Bifida was the direct cause of all of his unfortunate diagnoses.
 
My husband and I were referred to the Vancouver Women's Hospital and met with the Fetal Genetics and Fetal Medical Doctors. They confirmed our worst fears, our baby would not thrive in life or have the quality of life he deserved.
 
We gave Luca’s big brother the honour of choosing his name which came from his favourite Disney & Pixar movie “Luca”.
 
“Now whenever we miss Luca we can watch the movie and remember him together.” he says.
 
We have been given such a gift, a gift that is both eternally beautiful and yet full of such immense sorrow and suffering.
 
Luca has made me a Momma and I will be forever grateful for how he has broken me wide open, exposing to me the magnitude of a mother’s love for their sweet baby. Our hearts no longer beat the same rhythm as now Luca, our son is beating within each and every pulse.
 
My husband and I are now bonded by an experience no one can understand unless they too have felt the loss of a stillbirth, miscarriage or infant loss but we are stronger, our love bleeds deeper, we have found a new respect for one another and a profound understanding of just how fragile life can be.


We will no longer take for granted the miracle of making a life, the precious moments of a child growing inside a mother’s body or the true relief of being blessed with a healthy child. Now that we have experienced what we have, our hearts have expanded, bursting with compassion for the families that have walked a similar journey before us. Our hearts ache in a new way for you.
 
One thing we learned from this journey is that there is a lot of isolation, stigma and shame associated with miscarriages (under 20-weeks) and stillborn babies (over 20-weeks), having to end a very wanted pregnancy due to medical reasons/risk of mother’s health and we feel strongly that it is important that we share our story with vulnerability and honesty.
 
All in hopes that we might support another family one day that is faced with a similar heartbreaking parental decision or experience. You are not alone and should not feel you have to be silent about your traumatic loss. Above all, your baby died and this can be painful at any stage of pregnancy and all stages of loss should be honoured. A parent should never have to leave their child behind, it is the worst pain you could imagine but it happens, it's not uncommon and it is real.
 
Thank you to our family and friends, who are our unwavering network of support.

Thank you for listening to our story, the flowers, words of support, the prayers, healing ceremonies, taking our last family photos as the 4 of us, skip the dishes gift cards, flight passes, sending your mom to give us hugs, messages of us in your thoughts and reaching out even when you do not know what to say.
 
Thank you for reminding us that it is only up to us to choose what is best for our family, our child and our future. Thank you for allowing us to navigate our journey without judgement, only support and encouragement.
 
Thank you to the Mothers and Fathers of loss that have shared their own stories of loss, helping us to prepare, holding space for us and our grief, providing us with ideas and ways to support one another and showing us that we can and will get through this.
 
To our sweet, sweet baby boy Luca. How do we even begin to tell you all the ways you have been loved before you even began to grow within your Momma’s body. We could tell you about the people, the families and the community that prayed together for your arrival in your Momma’s womb. We could tell you about the years spent dreaming of you joining our family, of making our eldest a big brother and my Husband and I parents together. We could tell you how your Dad would place his hand on Momma's belly to fall asleep every night. We could tell you about all the days Momma would sway back and forth holding her belly feeling you kick, or how your big brother would kiss you every moment he got and tell you how excited he was to be your big brother.
 
Your life may have been short but you have forever imprinted upon your family and we are left unable to see the world in the same light. May you be free to be the little boy you deserve to be with Poppa Emil by your side, we love you, our sweet, sweet baby Luca.
 
Friends & Family - We ask that you try to feel comfortable in asking about Luca, our journey and reaching out even when you are challenged with what to say. Loss and grief does not have to be awkward, it can be simple and uncomplicated, just lead with your heart. We always have the option to return the call or text when we are ready but it is healing to know we are being thought of during this sad time.
 
Our family’s story does not end here; we truly believe it has just begun."
 

 Thank you so much to this beautiful Mama for sharing your son Luca.

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