Helping the Carman Family

The Carman Family; Brad, Amanda, Ryder, Jordyn and Declyn. Please read their story below as told by Amanda:

For the month of February we have a family tradition where we write “compliment hearts” for our son, Ryder and daughter Jordyn and we hang them on their bedroom door. On February 10th 2021, I was able to write my partner, Brad his own compliment heart “I’m pregnant!” This heart was given and received with extra love, not only because we were having a baby but because this baby was not easy to conceive. Having a third baby was a conversation. Our children are spaced out in age, and we wanted to be able to provide and have space in our home for this baby. One thing was sure, we knew we had a lot of space in our hearts to add to our family. After a year and still not being successful we decided to take a break and thought that maybe this wasn’t in the cards for us. Maybe our family was blessed with the two wonderful children we already had. Maybe we should be thankful and leave it at that. However, our hearts just didn’t quite feel completely full and we had decided that if by February we were not successful then that would be it. When February came I sat in the bathroom and thought this is it. I prepared my heart for the pain that I would see another negative pregnancy test. I looked up and said please, please give us this blessing.

The test was positive! We would have our third and our family would be complete. I have never in my life been so thankful then I was at that moment.

Declyn was the easiest of my three pregnancies. I ate well...except for the occasional chicken nugget, I exercised and was able, for the most part, to keep up with my other two children.

The thing with this pregnancy is that I always had this feeling that Declyn would be special in more than just the way that we had already considered him our miracle child.

When we had our anatomy ultrasound I went in feeling a bit on edge, just having a feeling that they were going to find something that we would have to prepare for. My suspicion grew as I knew the ultrasound was taking much longer then it should have. She couldn’t get a clear picture of his heart.

I left the appointment with some tears but reassured myself that everything would be ok. We were having a third, he would be ok and our family would be complete. Days later I received a devastating phone call informing me that Declyn had a hole in his tiny heart. Although the doctor took this seriously, I was told that everything else came back ok and odds were that the hole would close over time. Still devastated, I took his word. After our next visit I asked the doctor to show me the results because I had a strong feeling that there was more that maybe they were missing. I saw the report and everything looked good.

After this discovery, I would then start having my appointments with our labour and delivery doctor. She was amazing, and I honestly chose her because I liked that in her profile she wore a sweater with a lobster! When I spoke to her, she had reassured me that it was likely a small hole and that because everything else came back fine there was not a huge concern, but we would meet with cardiology to make sure. Call it Mothers instinct, but I knew in my heart that this baby had more of a story.

We finally got into cardiology weeks later when we received the news that I was terrified to get. This baby had numerous holes, and they in fact would not be closing on their own. I will never forget this day. Our doctor asked to speak to us in the conference room where he shared with us that our precious baby had something called AVSD complete and is often common in children with trisomy 21 (down syndrome) and that we should probably go for blood work and some genetic testing. I took his word, and although terrified, I felt a sense of relief that my suspicion was being heard. Our blood work came back positive for down syndrome and that was enough testing for us. We prepared for what life might be like. Assuming some extra work for milestones, surgeries, some parenting tweaks and a lot of learning. We were ready to take this journey on and give our boy the best life. When September 29th came, I went into the hospital excited yet terrified. We had been told to expect the worst. We may not get to hold him, he might be taken right away by the helicopter to CHEO, and that our baby boy might not come home for the first 4 months. I cried as they prepped me and when the doctor asked what was wrong, my exact words were; I was afraid that once he comes into this world, I would no longer be able to keep him safe.

Declyn arrived just after 9AM and he was beautiful. I held him in my arms for 2 hours before they needed to take him to the NICU where he would stay for a short 6 day visit. That’s right, our boy was a fighter right from the beginning.

We made it home and I will tell you Declyn was the sweetest baby. He slept, he cuddled and he was so happy. Every Wednesday Declyn met with cardiology where they all loved him. Our biggest struggle was the weight he needed to gain for his open heart surgery in February. In November he had his first admission. We were so thankful that we were given this much time. He was given an NG tube to help with his feeds although still enjoyed a bottle here and there. Declyn was then really starting to show even more personality; talking a lot, smiling and always moving his little legs. We had another admission just before Christmas because he had some fluid on his lungs. He was given another diuretic that helped clear this and soon we would be sent home to spend our first Christmas together as a family of five. We had a beautiful Christmas. Although we were careful and opted out of seeing family so we could stay safe, we enjoyed being home with just each other.

On New Year's morning just after the ball drop Declyn would just not settle. He was up all night and just couldn’t seem to get comfortable. We decided that afternoon that we should make a trip to COPC to have him checked out, Declyns' health was not something we took lightly. We were taken by ambulance from COPC to KGH. Declyn had spiked a very high fever of close to 105 and it just wouldn’t go down. The doctors and nurses tried their best to settle him but nothing seemed to work. Blood work, and urine samples were not showing anything, his echos and lungs originally looked ok and we knew it was not his heart failure. The doctors had called CHEO and prepared Declyn to be transferred. When we were about to leave we were told Declyn had taken a turn and was not stable enough to be transferred to CHEO and that now they wanted to take him to SICK Kids. As we patiently, yet frantically, waited for that ambulance to arrive our precious baby continued to decline while the doctors frantically worked on him and tried to figure out what was happening. After a tremendous amount of effort, machines, medication, pokes, and blood work our boy was finally stable. Our hearts felt a bit safe for a few minutes until we heard "code pink". An hour later our baby boys life was taken. His heart at rest, leaving ours broken.

Declyn passed away just after midnight on January 3rd, 2022.

"Although he was born with a broken heart; it was full of love, sweetness and lots of fight!" ~Amanda

Monies raised from donations will go towards purchasing a special headstone for Declyn to be placed where he will be laid to rest with his Aunt Jodi. Money above that will allow Brad and Amanda to take some extra time away from work to be with Ryder and J, and worry a little less about life's everyday expenses.

Thank you so much for taking the time to read their story.