17 year old Delainee dreams of a day when she can connect with hospitalized children bringing them comfort and connection the way her mother, Kerri, did the many times DeLainee was hospitalized, “I wish I could share my experience by handing the pillows out.” DeLainee and Kerri currently make pillows with fun patterns and themes that include popular kids movies, characters, and cartoons, but they’re only able to drop off the pillows to hospitals without interacting with the pediatric patients they’re helping. The hospitals they’ve worked with in several states have a holding period for donations of this kind. Now that DeLainee is seventeen, she hopes the hospitals will allow her to wait through the holding period and then physically deliver the pillows to patients. You may wonder what the difference is, but until you’ve lived in a hospital many times over, you can’t fully understand the need for connection and camaraderie.
At the precious age of four DeLainee suffered a sudden cardiac arrest. While living in the hospital for thirty days, they learned DeLainee has Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) due to a spontaneous mutation of the RYR2 gene. After having an ICD placed that came with many complications, DeLainee was ready to finally go home. A nurse advised Kerri that DeLainee should have a buffer between the straps of her car seat and her incision. Since nothing was readily available, Kerri made a small pillow. Several surgeries and hospitalizations followed due to complications with the leads on DeLainee’s ICD, and with that many different iterations of the little pillow protector. As DeLainee grew so did the pillows, now topping out at 12×15 inches. The duo have made and delivered hundreds of pillows over the years according to Kerri, “At first she (DeLainee) was the one to pick the fabric and then I would stuff and sew and put the label on. Now she has started to sew them with me so we can get them done more quickly. We now have two sewing machines.” The pillows seem to go with them everywhere – not just local hospitals. DeLainee is a huge baseball fan and travels with her mom to different Major League Baseball (MLB) stadiums. The pillows always come along for the trip, so when they headed out of town to watch the Bluegrass World Series baseball game, they donated pillows to pediatric patients at an area hospital. On a trip for a family wedding the pillows were packed and delivered. DeLainee follows her favorite baseball players, but was thrilled to meet NFL football player Damar Hamlin on that trip. He even promised to help her. They’re more than pillows, they’re connection.
Connection is what Kerri found in SADS while watching Dr. Ackerman on SADS Live, “I just was hooked once I was watching and thought, oh my gosh these people have all the
same questions and they have ideas. I liked how I could talk to a doctor that’s not our doctor. Sometimes you don’t remember to ask all of the questions at your doctor visits.” Dr. Charles Berul of Children’s National is DeLainee’s doctor who knows Dr. Ackerman and led them to SADS. Berul helped design the placement of the leads for DeLainee’s most recent surgery. It’s the first ICD placement where the leads didn’t move or fall out; a huge move forward for DeLainee who experiences PTSD from the sounds of the ICD alarm. When Delainee was about six years old she experienced an ICD shock she said felt like a horse kicked her in the chest. Now, she hates loud noises like doorbells and smoke detectors. While the new ICD is a help, the family plans to join the SADS ICD Support Group in hopes attending will once again create connection and comfort like SADS Live does.
DeLainee, once afraid to tell Kerri if she was having any symptoms out of fear of returning to the hospital, is now thriving and providing comfort to pediatric patients including cardiac patients who were the first to receive the pillows. Kerri advises, “Make sure you reach out if you feel like you’re alone. You’re not alone.” DeLainee has a goal of sending pillows to every state because, “It makes them (patients) feel more at home so they’re not scared.” DeLainee still uses her own pillows that have become like security objects because they now live in her bed and are well used. Delainee has always been shy, but the pillows donations have helped her come out of her shell, “It’s a comfort so when you’re sitting in the car it’s more comfortable.” Says DeLainee.
The duo want everyone to know, if you want a pillow you can reach out to Kerri at [email protected], “Ask your hospital if they’re interested and then we can send a bundle!”