Give Conner and Kali's Baby a Fighting Chance

my son and daughter-in-law, Conner and Kali, found out that they were going to have their first child. A short time later, they learned that their future child was going to be a boy! Up until their 20 week anatomy scan, they learned nothing but great things about his health and development.

In July 2024 - during the 20-week anatomy scan, the doctors found something wrong with the baby's heart. Further testing revealed a diagnosis of Hypoplastic Left Heart Syndrome (HLHS). HLHS is a rare and complex congenital heart disease where the left-ventricle of a baby's heart is small and does not develop properly. Without treatment, the baby is likely to only live for about a week postpartum.

Upon hearing this devastating news, Kali and Conner decided to give their future son his best fighting chance at life by allowing for surgical intervention at Johns Hopkins Children's Center. Surviving HLHS requires a series of three surgeries: The Norwood procedure (approximately 5 days after birth), the Glenn procedure (approximately 4 - 6 months after birth), and the Fontan procedure (between 2 - 6 years of age). These procedures are open heart surgeries and do not work to repair the heart but rather, reroute blood flow to allow their son to live with half of a functioning heart. HLHS survivors have coined the term "Half the Heart, Twice the Fight." for this reason. The most dangerous time of life is between the first and second procedures, where Kali, Conner, and their son will be living most of their lives out of Johns Hopkins under the constant supervision of the Pediatric Cardiac Intensive Care Unit (PCICU).

Individuals who make it to adulthood with HLHS may require additional procedures; however, many go on to live normal lives. This is a fairly new set of procedures, only about 40 years old, but research has found many individuals in their 30's and 40's living a normal life with HLHS. Their child has the potential to run, laugh, play, and grow just like any other child. Kali and Conner are so thankful to have such a strong medical team behind them, and to have an even stronger support network through their friends and family.

Funds will be used for uncovered medical expenses, potential temporary pauses in work, and the unforeseen expenses of living out of one of Johns Hopkins' many different housing options. Any unspent funds will be donated directly back to Johns Hopkins Believe in Tomorrow Children's Foundation. More information on this foundation can be found here: https://www.believeintomorrow.org/our-programs/childrens-house/