April is Donate Life Month
By Jackie Hay
Mommy to Benjamin
Born April 2022
Congenital Heart Defect – Hypoplastic Left Heart Syndrome
Transplant Survivor
In September 2021, we were surprised to learn that our family of three would soon be turning into a family of give! At our anatomy ultrasound in December 2021, we were told that Baby B had a “blip” on his heart. It could’ve been nothing or it could’ve been something critical; the doctor referred us to pediatric cardiology and maternal fetal medicine specialists. A few days before Christmas, we found out that Baby B had a variant of a congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). They explained that without surgery, our son would not live more than a few days.
Given that twins usually arrive early, the goal was to make it to 38 weeks so that Ben could grow as much as possible in preparation for surgery shortly after birth. At 37 weeks 3 days, in April 2022, the doctors told us that Ben had stopped growing, and that he was at an increased risk of being stillborn. That afternoon, our boys were delivered via c-section. It all happened so fast – Logan was first, but Ben was literally seconds after! They even have the same minute recorded on their birth certificates.
Ben was immediately swarmed by a team who worked to stabilize him. I did not get to hold him or even touch him before he was transferred to the Cardiac ICU. While my husband went with Ben, I held Logan as they stitched me. I was too nauseous from the anesthesia to even go visit with Ben that evening. It wasn’t until the next day that I was finally able to hold Ben.
At birth, Ben’s heart was functioning slightly better than expected. A little over 48 hours after the twins were born, Ben started showing signs of heart failure. Over the next few weeks, our family rode the most sickening rollercoaster ride. Ben’s status fluctuated quite a bit, and it became clear that our time in the hospital was just getting started.
We wanted our son to live. From the moment we learned that we were having twins, we wanted to see the boys grow up doing everything together. We imagined graduation ceremonies with them both walking across the stage. Weddings with each other as best man. We wanted all of our kids to have a life full of love, rich memories, and good health.
Up until Ben was about two months old, the doctors had been doing what they could to salvage Ben’s native heart. After numerous cardiac catheterizations, an open heart surgery, loads of medication, breathing support, and alternative feeding methods, Ben’s little body was getting sicker, and his heart just couldn’t meet his body’s demands.
In July 2022, Ben was listed status 1A for a heart transplant, and he was placed on a ventricular assist device (VAD). The VAD supported his heart until Ben received his lifesaving gift in November 2022. We received the call the night before Thanksgiving that they accepted a donor heart for Ben. No words can explain how we felt in that moment and over the coming days. We spent that Thanksgiving with our families, sharing with them the news that Ben was getting a heart. The day after Thanksgiving is when we sent our 7-month old son into a 17-hour organ transplantation surgery.
Ben’s journey has impacted our family in just about every way imaginable. Having three children under age two is challenging enough, but having an infant who lived in the hospital for 311 days in his first year of life is unlike anything we’ve ever experienced. As parents, Garrett and I learned just how strong we are. I’ve had to put my career on hold to be the best mom and caregiver I can be. We’ve had to give up a lot of sleep and sanity to keep our kids well cared for, but it’s a choice we will gladly make every single day.
Ben has every reason to be a grumpy little guy, but he’s actually just the opposite. My favorite thing about him is that despite everything he’s been through, he lives life with such joy. He loves people, enjoys exploring, and truly appreciates the little things. Ben is genuinely a miracle, and we will never stop appreciating this second chance we’ve been given.
Ben is thriving at home! We are 15 months post-transplant, and his heart function is looking great. He still has challenges to overcome, and he requires specialized care. But in many ways, he’s a lot like other kids his age. He loves playing with his brother and sister. Ben has the most infectious giggle, and his bright eyes are open windows into his sweet soul.
On Angels’ Wings gave us something we never knew we’d be able to have. The first photo session we received from OAW was the only newborn photos we had done of our boys. The raw nature of capturing our very sick child alongside our very healthy child is both heart-wrenching and incredible. All of our OAW photos are beautiful, and they truly show the progression of Ben’s health. Some of my favorites are with Ben and Logan sharing a bassinet and the Santa photos just days after Ben received his transplant.
I understand if you have hesitation about memorializing images of your sick child. These times are grueling, and the memories are painful. As someone who is fortunate enough to have living children, I’m so grateful that I can look at our OAW photos and visibly see the strength and resilience of my child. Get in the photos. It doesn’t matter if you haven’t brushed your hair or if you have a coffee stain on your shirt; you’ll be glad to look back on those baggy eyes with tears dropping down your cheeks. You will see your love captured. You will remember that you were there, you showed up. OAW not only provides beautiful photos but beautiful memories as well.
I hope that Ben lives a life full of happiness, love, and enriching experiences. We’ve done our best to give that to him in the short time he’s been out of the hospital. We hope that all of the hardships he’s had to endure lead to even more positive outcomes. It’s possible that he will need another heart transplant in the future, but we will encourage him to take the best care of the heart he’s been given. I hope that his story will inspire and educate other families who may find themselves in similar situations.