Help with Medical Expenses for Riley CiNra Xiong

Hello Friends & Family,

 

On October 8th, 2021 at 4am, our first, beautiful, and precious daughter Riley Ci Nra Xiong was born. She weighs 6lbs 1.4oz. When she arrived in this world she had complications with her oxygen levels and was immediately transferred to the NICU at U of M Masonic Children's Hospital.

 

Riley had heart failure at birth requiring ECMO (extracorporeal membrane oxygenation) support for her heart and lungs. The doctors are not sure why she has heart failure but suspect it could be due to an infection or underlying problem with her heart muscle. Her heart function has moderately improved while on ECMO, but her doctors and we are concerned that she will continue to need extra heart support even after disconnecting from the ECMO machine. This is because her left heart muscle is not squeezing normally and she has mitral regurgitation, which is when some of the blood flows backwards toward the lungs when her heart squeezes instead out to her body. This mitral regurgitation makes the heart work harder and we worry that her heart will tire out and need extra support. Her doctors estimate that there is a greater than 50% chance that her heart will need additional assistance. This is difficult to determine until she is disconnected from the ECMO. The support that she could need is called a ventricular assist device, or VAD, with the ultimate goal of her getting a new heart via heart transplant. This would require her transferring to a different institution where they place the assist devices and perform heart transplants. She would need to be evaluated by the outside institution and they would determine whether she is a good candidate for the assist device and transplant. They may determine she is not eligible because of her complicated course, especially the bleeding in her brain. If she was accepted, she would need to remain hospitalized in that hospital for her ventricular assist device placement and recovery, and then would need to wait until a heart was available that is a good fit. After her transplant, she would likely need to stay locally for several months up to a year in order to attend frequent follow-up appointments.

 

These are very complex decisions for us as a family to make but we trust the doctors are doing what is best for our daughter. Because of this, we're asking for help for any amount of donations that will go towards her medical and traveling expenses (should she be transferred out of state). Any amount is appreciated during this hard time for us.

 

Thank you from the bottom of our hearts,

Ker, KB, & Riley Xiong