Amy B’s Story

My name is Amy and I am 29 years old from a small island in New-Brunswick, Canada. 

My husband Francis and I met when we were 15 years old and have been inseparable ever since. We decided to start trying to conceive right after our wedding and we were blessed to find out we were pregnant three months later. I remember seeing those 2 pink lines on that test, feeling so excited and anxious at the same time. I gave birth to our handsome and healthy baby boy Ludovick on August 11th 2019. We fell in love instantly.

We knew we wanted to give him a sibling. We decided to start trying again and I got pregnant in March 2021. We had our dating ultrasound and I remember my OBGYN showing us our tiny little baby, inside a heart shaped sac. I went on to have a healthy pregnancy. The quad screening came back with low risks for any abnormalities. I was told we had about 1/1000 chance of having a baby with a chromosomal abnormality. Our ultrasounds were also looking good. 

On December 3rd, I started having contractions. When we got to the hospital, I was already 6cm dilated and got the epidural right away. 3 pushes was all it took to deliver our little boy, whom we named Eliot. I wasn’t able to hold him when he was born since he had a hard time breathing, most likely due to mucus and that his oxygen levels were low, so he needed CPAP. They took him and we called our families to give them the news. Less than an hour later, a pediatrician came into the room to tell us that they were suspecting a serious problem with Eliot’s heart, so they had to airlift him to the nearest children’s hospital, a 5 hour drive from our home. I had just given birth, but there was no way I was staying in the hospital while my baby was being airlifted to another province. I was able to get discharged from the hospital to be with Eliot. My husband and I drove to the IWK hospital and got there at 2am.

After many tests, we met with the cardiologist who told us Eliot had 3 different heart defects and needed surgery as soon as possible. His cardiologist decided to try a procedure in the cath lab, but unfortunately it was unsuccessful. The only option was open heart surgery to install a shunt in his heart. On December 11, Eliot’s due date, he had open heart surgery. We were transferred to the PICU so Eliot could recover from his surgery. Days later, genetics met with us and we were told that he had Trisomy 21.

Eliot fought for 2 months in the hospital. He had open heart surgery, an ostomy due to Hirshsgprung disease, another surgery for his heart due to complications, and many tests, blood transfusions, intubations, and the list goes on.

January 27th we were told by the neurologist that Eliot had an intraventricular hemorrhage that could end up in hydrocephalus. January 30th, the doctors told us that Eliot’s heart function was very low and that he would require a heart transplant to survive, but he was not eligible to a transplant due to all his other conditions. Our only option was comfort care. We met with the Pediatric advanced care team, who explained what palliative care would look like for Eliot. The PACT team doctor told us he had about 5-7 days left. We were devastated and decided that we would make the most of our time with our son, creating memories. The hospital made an exception for us to have our son Ludovick come over to visit his brother, as well as our immediate family who drove to Halifax to be with us during these though times. They removed Eliot’s feeding tube, oxygen, everything that they could to make it easier for us to hold him and be close to him, while keeping him confortable. I was able to sleep with him in the hospital bed during that whole week when he was in palliative care. We gave him his first bath, were finally able to dress him in his newborn pyjamas and his dad would sing Luke Combs and Chris Stapleton songs to him everyday. The hospital staff brought us some supplies to make some keepsakes, such as handprints and footprints. Eliot got baptized and received the last rites while in the hospital. The PACT team arranged for a photographer to come a take pictures of us with Eliot, so we could have memories with him to keep. I will be forever grateful for those pictures and I still look at them every day.

I remember Eliot’s last morning with us. I woke up at 5am, it was 8 days after we were told he was on palliative care. I was looking at the sunrise in our hospital room window, while laying in the hospital bed next to my son. My husband was asleep in the bed next to us. I saw a bird coming straight to our window and thought that must be a sign. I told my husband to wake up. He joined us in our bed and we took turns holding and cuddling Eliot. My husband had asked the nurses for a rocking chair, so we could rock Eliot and sing to him. I sat in the chair and rubbed his forehead as I always did. And that’s when he took his last breath, in my arms, exactly how I had pictured it would happen. My husband and I cried in that room for hours, not wanting to let go of our little boy. Eliot’s pediatrician and his cardiac surgeon, who we had built a very special bond with, came in and stayed with us for a little while. Packing our stuff and saying goodbye to our son was the most heartbreaking thing we’ve ever had to do. We are so very thankful for the hospital staff for their support during that time. We never felt rushed to leave and were able to take the time we needed with our son. 

Coming back home without Eliot was very hard. I felt a lot of anger in the beginning, I wondered why this would happen to us and told myself that we must have done something bad to deserve this. I felt lonely and depressed. We were very lucky to have our family and friends gather around us during that difficult time. We think of Eliot every day that goes by. I got a ring made with his ashes and still have his urn in our home. I still talk to him and kiss him good night. Since Eliot’s passing, my husband and I have gotten many signs from our special angel and we know he is never far, watching over us. 

In June, I found out I was pregnant. It was such a surprise, as we weren’t trying to conceive. I had just stopped taking contraception. I announced the pregnancy to my husband on Father’s day. A week later, I started cramping and bleeding, and found out I had an early miscarriage. Two weeks later, I was supposed to have my period, but found out I was pregnant again.

I am now 17 weeks pregnant with our rainbow baby boy. Pregnancy after loss is such a rollercoaster, but we couldn’t be more blessed with this precious gift life has given us. Everything is going very well. Our ultrasounds look good and our NIPT test came back negative for chromosomal abnormalities. We feel so blessed.

Losing a child is the most heartbreaking and isolating thing I have ever been through, but being a part of this project and reading all these stories has helped me a lot. To my fellow loss parents, if you’re reading this, please remember that you are not alone and that “Every storm runs out of rain”.

This year is our first Pregnancy and infant loss awareness month as grieving parents and I thought it is so special that we got to take part in the finding your rainbow project during this month of October. I cannot think of a most special way to honor our sweet angel Eliot, while celebrating this new pregnancy we are so grateful for. While we know we will never be able to replace Eliot or fill the void his passing has left in our hearts, we are so happy he sent us another blessing, a little brother we like to believe he handpicked for us.

Amy, her husband, and their son sit in front of a lighthouse.  She wears the rainbow skirt spread out around them.

Amy wears a pink dress and the rainbow skirt.  There is water in the background.

Amy wears a pink dress and the rainbow skirt.  She looks down and cradles her pregnant belly.

Amy wears a pink dress and the rainbow skirt  She is holding her son in her arms.

Photos taken by Pascal Chiasson Photography.

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3 thoughts on “Amy B’s Story”

  1. WoW. Tu es spéciale Amy. Tu es une femme forte. Ton conjoint aussi est un bon papa fort. Eliot va toujours être à vos côtés. Bonne grossesse à toi et que bébé arc-en-ciel 🌈 soit le rayon de soleil que vous attendez avec impatience. Félicitations à vous deux et Ludovic aussi. Il est choyé de vous avoir comme parents.

  2. Je n’est jamais autant pleurer! Amy et Francis, votre histoire est tellement touchante.. je vous souhaite tout le MEILLEUR au monde!! Merci de partager… je sais que ces rien à côté de vous, mais ma fille a la maladie d’hirschprung et sa ma tellement fsit quelques chose d’entendre que le petit l’avais aussi, car ces rare.. je vous souhaite que du positif .

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