‘He opened his beautiful, dark grey eyes, wise beyond his years. We made him comfortable, and waited.’: Mom vows ‘as long as I live, Daniel’s memory will too’ after losing son to congenital heart defect

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“Motherhood wasn’t a simple journey for me. Throughout most of my life having children didn’t feel like part of my story. I was too selfish to be a mom. I didn’t have a motherly instinct. As I got older, life taught me some hard lessons and my heart yearned for something more. After two early miscarriages in 2012 and 2013, I felt like the universe was punishing me. It was my fault these children died. Clearly the fact that I thought I didn’t want children is why these children died. I let go of that guilt and decided to try again.

Courtesy of Felicia Blackburn

In early 2016, I found out I was pregnant. This had to be it – third time’s the charm, right? My pregnancy continued uneventful until 20 weeks. I didn’t gain much weight, I had no morning sickness and generally I felt great. At 20 weeks we had the standard anatomy scan. My husband couldn’t come with me but I didn’t think too much of it. The scan was really just a formality to check gender, wasn’t it? My mom came with me. I remember looking at the screen and watching the ultrasound tech. We were laughing and chatting and the tech was commenting on how busy and active the baby was. Suddenly, the mood changed. The tech became silent and she no longer made eye contact with me. I could see tears brimming her eyes. After what seemed like an eternity, a doctor came in and uttered seven words that turned my life upside down. ‘There’s something wrong with the baby’s heart.’ Fear, sadness, speculation, guilt blame. So many emotions, so much disbelief. I made it past the 12 week ‘safe zone,’ nothing is supposed to go wrong now.

Courtesy of Felicia Blackburn

A week later, we met with a genetic counselor. I will always remember her name, Charity. She went through all the possible conditions they thought our baby had. She asked me and my husband questions about illness that ran in our family, spontaneous deaths that had occurred and any recollection of babies in the family dying before or shortly after birth. It was overwhelming. I was holding back tears the entire time. Charity told us that our baby would likely die. At the end of this long and mentally exhausting appointment, Charity says, ‘Oh, and congratulations on your baby.’ Congratulations on our baby? You mean the one you told me is going to die? I ran out of that room so fast. The minute the elevator doors closed behind me, I was hysterical. I couldn’t talk, I couldn’t think, I couldn’t breath. Why was this happening? What did our child do to deserve this? Hadn’t we already suffered enough? Our baby (a little boy) was officially diagnosed later that day with a severe congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). This basically meant he would be born with half a heart. We were given three options: terminate the pregnancy, wait until the baby was born and attempt three heart surgeries with the possibility he would need a heart transplant later in life, or bring our son into the world and wait for him to die.

Courtesy of Felicia Blackburn

It wasn’t an option for me to end the pregnancy as I was holding onto every hope that maybe the doctors were wrong. I couldn’t stand by and just watch my son die without at least giving him a chance, so we decided to plan for the surgery. Chances of our son surviving the first surgery were high. If successful, he would go on to live a relatively normal life (he would just have a few more doctors visits than most kids). Aside from regular visits to a pediatric cardiologist, the rest of my pregnancy continued uneventful. Our son was developing and growing normally. Despite it all, his broken heart kept beating.

We made plans to travel to Edmonton following our son’s birth so he could have his first surgery. We finished the nursery. I found the perfect quote that we put on the wall behind the crib, ‘Every child is a story yet to be told.’ We did normal things like buy a car seat. We planned, we cried, we prayed for a miracle.

Courtesy of Felicia Blackburn
Courtesy of Felicia Blackburn

On December 15, 2016, after 17 hours of labor, our son Daniel Gabriel was born via emergency c-section at 42 weeks gestation. He was born unconscious as his heart rate had dropped suddenly during labor. He was stabilized and I was able to see him for the first time three hours after he was born. I was wheeled up to him and we officially met face to face. He was absolutely beautiful. He had a head full of dark, curly hair like mine, my nose and his dad’s forehead. He was small, but perfect. He was hooked up to multiple machines and had wires everywhere, but he looked just like any other newborn.

Courtesy of Felicia Blackburn

We held him for the first time about 24 hours after he was born. He opened his eyes when his dad held him. Beautiful, dark grey eyes that looked wise beyond his years. I had a strange feeling holding him…it was like a piece of me was missing, but he was right there in my arms.

Courtesy of Felicia Blackburn

After checking Daniel’s heart and considering the other factors of his traumatic birth, we were told that heart surgery was no longer an option. We had no options. Daniel was very sick. Along with his HLHS, he had Total Anomalous Pulmonary Venous Return (TAPVR) a condition where the vessels that bring oxygen rich blood back to the heart from the lungs are improperly connected. The only thing we could do is make him comfortable and wait for him to die. I couldn’t think, I couldn’t breathe, I felt like I was watching Daniel’s life unfold in a dream.

Courtesy of Felicia Blackburn
Courtesy of Felicia Blackburn

We rushed to the NICU the morning of December 16th after attempting to rest for a few hours. We walked into a large group of people surrounding Daniel. Nurses, doctors, specialists. They had called a priest for us so we could get Daniel baptized. I knew we didn’t have a lot of time. My husband held me up and we watched our son being baptized. Daniel didn’t move, he didn’t open his eyes, he didn’t make a sound. We called our families.

Courtesy of Felicia Blackburn

After more than a day, I was finally able to hold Daniel unhooked from everything. I remember how fragile and light he felt in my arms. I focused on memorizing the features of his face. We took pictures and he met various family members. Oddly, I couldn’t cry. I recall a single tear escaping my eye and falling on his face. I realize now I was in shock. I had no emotions. I tried to feel but I couldn’t. 33 hours after he was born, Daniel passed away in my arms. As quickly as he arrived, he was gone. We left him too soon and we never took a single video, if I could go back and change anything about those two days, aside from the obvious, it would be those two things.

Courtesy of Felicia Blackburn

Keeping Daniel’s memory alive is my purpose. Sharing his story gives me a reason to talk about him. It gives me the strength to face another day. His short life impacted mine immensely. We’ve made donations in his honor, done random acts of kindness in his name and helped other heart babies. But none of that will bring him back – it’s simply a way for me to channel the love I have for him into something tangible. It makes him feel real and alive, and to me that’s worth everything. Life will forever be filled with ‘what ifs’ and ‘why’s’ but as long as I live, Daniel’s memory will too.

Courtesy of Felicia Blackburn

At Daniel’s memorial service the officiant shared a story called waterbugs and dragonflies. The dragonfly is my symbol for Daniel because of the promise they hold.

‘The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.’ Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…’I can’t return!’ he said in dismay. ‘At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.’

And the dragonfly winged off happily into its wonderful new world of sun and air…’”

Courtesy of Felicia Blackburn

This story was submitted to Love What Matters by Felicia Blackburn of Winnipeg, Manitoba, Canada. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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