During the month of September, Bonsie will feature a brave baby and family who has triumphed in the midst of frightening medical challenges. In honor of NICU Awareness month, we are also giving back to our local hospital, Barbara Bush Children’s Hospital, and donating our babywear to other NICUs and medically complex babies.
Our mission at Bonsie is to educate parents on the benefits of skin-to-skin contact and encourage this healing practice. The design of our babywear is uniquely crafted to make skin-to-skin contact easy for babies in and out of the NICU; we make babywear with purpose. Skin-to-skin contact is particularly crucial for NICU babies, which is why we are so grateful for the opportunity to share these inspiring stories with our readers.
Kix is the second baby in the world to survive a partial heart transplant. He had heart surgery when he was just 16 days old and spent over five months in the NICU. Lorna, his adoring mom, shared details of his condition, his surgeries, and his recovery with us.
“Kix was born with what we thought was tetralogy of fallot (a birth defect that affects blood flow through the heart), but once he was born, it quickly changed to a truncus arteriosus (a more severe heart birth defect in which survival without surgery is rare). We found out he had a heart condition at our 20 week anatomy scan. He had severe regurgitation, so Dr. Turek at Duke encouraged a partial heart transplant, instead of the normal conduit procedure done, in hopes Kix could have fewer surgeries. We ended up going with the partial transplant. Kix is now the second baby in the world to have this done.”
Lorna explained the specifics of what Kix’s surgery entailed.
“A partial transplant is taking valves from a heart that won’t work for an actual full transplant. If the valves work, then that’s all this procedure needs. Kix was 16 days old when he had the partial heart transplant and VSD closure. They placed a pulmonary valve from the other heart and turned his truncal valve into his aortic valve.”
Heart surgery was not the only hurdle that Kix had to overcome.
“After heart surgery he had two arteries moved away from pressing into his trachea a few weeks later. After this surgery he developed a staph infection, so he had three surgical washouts. Eventually, he needed a trach from several failed extubation attempts because of his Broncho Malaysia. Following the tracheotomy he had his g-tube surgery and diaphragm plication. Kix has one kidney and DiGeorge Syndrome as well.
"He spent almost six months in the hospital and fought so hard! He is our warrior.”
Kix’s medical conditions tested Lorna, her husband, Zach, and their family in unimaginable ways. Despite these challenges, their belief in God filled them with strength.
“Finding out about his true diagnosis was incredibly hard. Our faith is strong, so we clung to Jesus through it all. He truly never left Kix or our sides. So many scary incidents occurred waiting on the heart. SVTs, blue spells and stridor breathing from his tracheomalacia (the collapse of his airways while breathing). But the lord truly gave us a calmness only he could provide.”
Because of Kix’s condition and his trach, practicing skin-to-skin contact initially was not easy.
“[Skin-to-skin contact] was so hard to do with all his issues, but we got to try skin on skin a few times before his heart surgery. He had so many tubes because of being intubated for so long and then trached. Once the trach healed I got to do more skin on skin…the best after having to wait for so long.”
During Kix’s extended hospital stay, Waylon, Lorna and Zach’s oldest son, stayed with his grandparents so that Zach could complete nursing school and Lorna could stay at the hospital.
“Our son, Waylon, had to live with my parents while my husband was completing nurse anesthetist school so I could spend my time at the hospital with Kix. It was the hardest balancing act we have ever done, but now that we are through this storm."
We are overjoyed to report that Kix is home with his loving family and on the road to recovery.
“Since being home, Kix has been doing so well. He is smiley, happy and kicking butt at PT, OT and speech! I’m so proud to be his mom. His brother loves him so much and is transitioning into his big brother role so well. My husband graduated from school and we just bought our first home. The light at the end of the tunnel has approached our family; we feel blessings on blessings daily, and even though Kix could need surgery again, he’s taught us to soak in each day we have on this earth and to slow down our busy lives. He’s such a blessing to us.”
“Heart babies are such heroes. I’m so proud to be Kix’s mom! He’s touched so many people's lives and it’s so obvious that Jesus has huge plans for this little guy!”
Bonsie Skin to Skin Babywear has changed the way parents dress medically complex babies in the NICU setting. Bonsie's unique design allows doctors and nurses to easily place sensitive medical equipment on babies while keeping them warm, while also allowing for skin-to-skin contact without removing clothing. We offer a range of sizes from preemie to size 6-9 months, as well as footless options, short sleeves, and rompers to accommodate various needs.
It is a privilege to meet these remarkable NICU families and share their stories with you. Working with families, such as Kix, Lorna, and Zach is at the heart of everything we do at Bonsie. We hope to provide knowledge and encouragement to new families everywhere and help as many babies as we can in the process.