Louisa was born with hypoplastic left heart syndrome (HLHS) and an intact atrial septum. HLHS is a very rare congenital heart defect that affects normal blood flow through the heart because the left side of the heart is underdeveloped. As an infant, Louisa had two of three planned open heart surgeries for HLHS. She spent the first 18 months of life in and out of the hospital. When she was home Louisa was a typical infant and toddler, interspersed with lots of doctors appointments and early intervention therapies. In early 2023 Louisa’s heart began to fail, and after a whirlwind of unsuccessful treatments, a hospital transfer and in-depth evaluations we learned that Louisa would need a heart transplant. In addition, she needed mechanical support with a ventricular assist device (VAD) to help her heart recover and her body become stronger to reach a successful transplant. Louisa thrived during the seven months on the VAD. Louisa was popular on the cardiac floor, and was often called the queen of the unit.  Louisa made friends of all ages and loved walking around the unit chatting with everyone. During this time Andrew and Cameron stayed at the nearby Ronald McDonald House while Christine stayed at the hospital with Louisa. We relied on support from our families to help care for Cameron while managing preschool, work and hospital life.

On October 25th 2023 Louisa received her new heart. We had a lovely morning as a family on the day of her surgery. Louisa went down to the operating room around noon. At around six p.m. we had the emotional and surreal experience of watching the team arrive with the donor heart after they traveled to retrieve it. The transplant process took almost 12 hours, ending our day with seeing Louisa back in her hospital room. A day we will never forget. Louisa took some time recovering from transplant, with some ups and downs.

On the evening of December 5th 2023 Louisa was cheered and celebrated by her team of nurses and doctors as she was discharged from the hospital after 278 days. We spent a few days at Ronald McDonald House, and on December 8th we finally went home to start the rest of our lives again. Louisa had an amazing team of doctors, nurses and therapists who helped get her home. We will forever be grateful for the work that they did and continue to do for Louisa. She continues to be closely monitored by her doctors with regularly scheduled appointments.

Louisa has been loving life with her new heart. She is a typical three year old. She loves to talk and sing, play with baby dolls, go outside, and spend time with family. Louisa will be starting preschool in the fall. We love being at home and watching her grow; we continue to be amazed by her. We are thankful for all the continued love and support we have received from our family and friends.