Support Berkeley Kemp's Heart Transplant Journey

Hi! I’m Berkeley Kemp and I need your help!

My twin, Sahara, and I were born via C-section on June 24, 2023, one week before our scheduled due date. It was discovered on this day that I had a congenital heart disease called Ebstein’s Anomaly that would require my immediate delivery and specialized treatment at birth, as my case was severe.

Upon entering this world, I was rushed from Northside Hospital to Children’s Healthcare of Atlanta (CHOA) Egleston, by ambulance, while my Mom and Sister continued to receive care at Northside Hospital. My Dad would go back and forth between hospitals to check on us. Eventually my Mom and Sister recovered and were discharged from the hospital. Mom, overwhelmed with gratitude and tears of joy, was finally able to visit and hold me for the first time. What an amazing feeling!

I spent the next six weeks at CHOA Egleston’s Cardiac Intensive Care Unit (CICU), until I was finally discharged to go home. Bonding with my Mom, Dad, my older sister Phoenix (3 years old) and my twin sister, Sahara, was wonderful, but my time spent at home came to a halt, when I contracted a common cold.

On October 30, 2023, while at a routine physical therapy appointment at Scottish Rite Children’s Hospital, my oxygen level dropped. I was rushed to the Emergency Room at CHOA Egleston, where I was intubated and admitted to the CICU again. By November 21, 2023, things were looking better for me and I was discharged and able to rejoin my family, at home. This time my Mom and Dad decided to purchase an Owlet Monitor to keep a close watch on my vitals.

On December 15, 2023, my oxygen level dropped to 50% on the Owlet monitor and my parents called 911. I was, again, rushed to the Emergency Room at CHOA Egleston. I was intubated and admitted back to the CICU. During this time, my condition worsened.

On January 14, 2024, I was placed on a form of life support called Extracorporeal Membrane Oxygenation (ECMO). During this hospital stay, I underwent open heart surgery where the medical staff performed a Starnes procedure and placed a 3mm shunt in my heart. I spent 155 days on ECMO and during that time, I suffered renal and respiratory failure, but ultimately overcame both obstacles. In addition, my fingertips became necrotic due to a lack of oxygenated blood to that area of my fingers. Unfortunately, I eventually lost the fingertips of my left hand.

In February, my Mom quit her job to devote her time to visiting, advocating, and caring for me as well as to take care of my sisters. Dad continued to work to support us all and he visits me when he gets off of work.

After many trips to the Cath Lab and several failed attempts to extubate and ween me off of ECMO, my family was told to prepare for the worst, as the medical team at CHOA felt that they had reached their limit of care and could provide no other options to save my life. Distraught and devastated, my family and loved ones quickly went into action, praying hard for a miracle!

I endured so much but I was determined to live!

I am always smiling, I wave hi and bye, I blow kisses, I dance to music and I can play a mean game of Patty Cake! Who would want to say goodbye to all of that?

Desperate for help, Mom reached out to hospitals across the country for second, third and fourth opinions, but of the medical facilities that were reached, none could offer any further options for me while still on ECMO.

As a final effort, to save my life, my medical team at CHOA decided to attempt to increase the size of my shunt to allow for better pulmonary flow; an extremely high-risk procedure, due to the current condition of my heart.

On June 17, 2024 the procedure to increase the size of my shunt was successful! Our prayers were answered and I was able to immediately come off of ECMO. I was, instead, placed on a Left Ventricular Assist Device (LVAD) called a Berlin Heart. With this device, I have the opportunity to become a candidate for a heart transplant.

One week later, on June 24, 2024, I was celebrating my one year Birthday with my twin sister, my family and my CICU nursing team! I even got the chance to get out of my room and take a stroll throughout the unit. It was an awesome Birthday celebration!

On July 3, 2024, after 215 days in the CICU, I was moved to the CACU. I even got the chance to go outside to the hospital garden. It was my first time outside in 7 months! Now I have been accepted as a patient and approved to transfer my care to New York City to undergo heart transplant evaluation. As a highly sensitized patient, I will need a special type of heart transplant called a Positive Crossmatch Heart Transplant. We are claiming now and through prayer that the evaluations go as planned.

The procedure will be performed at the Morgan Stanley Children’s Hospital of New York/ Presbyterian at the Columbia University Irvine Medical Center. (Try saying that 3 times fast)

We are grateful for this medical team and we thank them in advance for giving us hope, as they specialize in the type of heart transplant that I need!

With evaluations forthcoming, I will be transported to New York via Medical Flight next week (the week of July 22nd) and my family must relocate to New York. Im expected to spend 6 to 9 months on the transplant list and must remain in the hospital during that time. Post transplant care in New York is for an additional 12 months. Please help my family as we fight for my life! Thank you.

Love, Berkeley

We, Berkeley’s family, are humbly asking for your help with the cost of moving expenses, food, lodging, flights, etc. as we relocate, at such short notice, and make New York City our new home. We are thankful for your support, prayers, encouragement and donations as we fight to give Berkeley a chance at life!