Our team is in memory of our late son, James Gabriel.
Below is a little write-up we did for his journey when he was born. We hope to continue honoring his name and using it for awareness and positivity.
Thank you for being here, and if you have the means to donate, THANK YOU! If not, please feel free to just read his story and our journey below.
We wanted to take this opportunity to not only announce to those not aware, that we were expecting our second child but to tell the story of what had developed within the pregnancy and where we are now.
We found out about the pregnancy in mid-January. We were admittedly a bit surprised, but at the same time very excited to give Maeve (Our first child) a sibling. We went to our first appointment soon after where they informed us the estimated due date was August 18th – we have a TON of August birthdays so wondering if/ who the baby might share a birthday with was top of mind - we obviously went into immediate planning mode to get everything we needed ready and make plans for the new one.
Everything had been going great, we had a couple of ultrasounds, and the heartbeat was sounding great, and the baby was looking good. The time finally came when we scheduled the anatomy scan. We decided that for this one, we were going to keep the gender a secret. That appointment was on 3/22/21 – we were very excited to get the 3D images, the updated ultrasound, and see where our little one was measuring. Little did we know that 3/22/21 would be the day that would change our lives forever. The woman performing the scan finished capturing what she needed and told us that based on what she was seeing there were some severe concerns with the images of the heart. She sent these images to the attending doctor at the downtown Charleston location, and they told us we needed to immediately go there to get some more in-depth scans.
At this time, our hearts stopped and raced, all at once it seemed, we rushed downtown where they took some more in-depth scans of the heart. Given the severity of what was going on – we decided to find out what we were having…. IT’S A BOY!
We would come to learn over the next month or so that there were multiple complexities and issues in addition to the most significant diagnosis of an Unbalanced AV Canal – or Single Ventricle Pulmonary Stenosis.
To put it into perspective, the rarity of this is 1-3% of all pregnancies have a CHD diagnosis, with only 25% of those being HLHS or Single Ventricle…. which comes out to <1% chance of this happening.
The next several months would be numerous appointments, scans, second opinions, and gut-wrenching conversations not only with an array of medical professionals but with friends, family, and ourselves as well.
Ultimately the time came when Kelly delivered baby James on the afternoon of 8/11/21. He was a fighter, he made it through the delivery and was able to be greeted by not only us but both of our families as well, who got to meet and hold him. However, with the coordination of the Cardiology department, they were able to do a scan directly on James and confirmed everything he had been diagnosed with and that we feared. However, he was such a fighter, that his vitals were doing better than expected and they offered us to take him home and spend the time with him there rather than at the hospital. The palliative care team at the hospital (MUSC) set us up with an organization called Hands of Hope – which is a pediatric hospice service, who sent a nurse to our home where we made sure he had everything he needed to be completely pain-free and comfortable. During this time, he made it so long that we got to do some family things that we will remember forever; snuggled on the couch, watched a movie with his big sister, took a bath with his big sister, and was loved by family constantly.
The extra time we were not expecting to get will be something we cherish forever and could not be more grateful for. However, James ended up passing away on the evening of 8/15/21 at 4 days of age. He passed away comfortably and pain-free in our arms at home.
We don’t write this looking for any desired attention, but in the realization, there would be questions and curiosity as our situation became more known. Ultimately, we decided we wanted it to be out there for anyone who wanted to take the time to read this and know our story.
In addition, it is our goal to not only tackle these challenges within our journey but also try to use this situation to hopefully bring awareness to a rare but serious condition that is ever-evolving and impacting the lives of children everywhere.
We are both continuing to process, absorb, and accept the situation we are in and would invite anyone who has questions or comments to please not hesitate to reach out. We may not have the response, answer, or advice you are specifically looking for but would be more than happy to just hear from you.
If you have made it this far, we would like to truly thank you so much for taking the time to read through it and share in our journey.
Sincerely,
Kyle, Kelly, and Maeve McCormack
