Heart warrior Sienna

My name is Diana Knox and I am the grandmother, aka Mimi, to our heart warrior, Sienna (DOB 6/27/22). Sienna was diagnosed prenatally with Trisomy 21 and a congenital heart defect that would require open heart surgery to save her life. Sienna’s heart defect was a complete balanced atrioventricular septal defect, or AVSD , (a large hole in the middle of her heart where the 4 chambers of the heart should be connected) a narrowing of her aortic arch as well as moderate-severe mitral valve regurgitation. Sienna was admitted to Lucile Packard Stanford Children’s hospital on September 13, 2022 after a cardiac catheterization procedure due to her severe heart failure. She had her first open heart surgery on September 26, 2022 to repair her AVSD & mitral valve. Sienna came out of surgery with her mitral valve still moderately leaking as there was not enough tissue for the surgeon to use to properly repair the valve since she was only 3 months old. Her heart failure symptoms began suddenly again about a week and a half post surgery. On October 7th, she was taken to have a small procedure done , a cardiac catheterization, in order for the surgeon to see exact measurements and pressures in her heart/lungs to assess and help formulate a plan. Late in the evening of October 8th Sienna coded from the breathing tube becoming dislodged. Thankfully, the team performed excellent CPR and she was revived after 15 minutes. Sienna’s heart failure symptoms progressed severely requiring re-intubation on October 23rd, 2022.

Sienna had her second open heart surgery on October 27, 2022 in order to repair her aortic arch and a second attempt of repairing her mitral valve. Sienna’s valve continued to moderately leak again as there was still not enough tissue for the surgeon to successfully fix it. She has been intubated since, over 6+ weeks, with one failed extubation trial in between. The medical team at Stanford Children’s have continuous discussions regarding next steps for Sienna. She is fighting hard every single day.

Little did anyone know that Cassandra, Javauhn and Sienna would end up in the situation that they are in. We are starting this gofundme in hopes of helping their family pay off some of the medical expenses/ bills that have and continue to accumulate during Sienna’s prolonged hospitalization and open heart surgeries. She will remain hospitalized for the foreseeable future. She will continue to have lifelong cardiac medical needs. Our family is kindly asking for any contribution to assist with these medical costs for Sienna. Cassandra, Javauhn and Sienna are loved by many people and have a wonderful community of friends and family, we couldn’t be more grateful.

Thank you for taking the time to read this and donate for our precious heart warrior, Sienna. Any amount donated is truly appreciated. Please feel free to share this page with your community and networks.

Cassandra & Javauhn post updates of Sienna’s journey so that you can stay updated on Sienna’s CaringBridge site. The link is as follows: https://www.caringbridge.org/visit/heartwarriorsienna

Site Name: heartwarriorsienna