Baby Zyair Medical Care Needs

HIS NAME IS ZYAIR CREE STEPHENS Here is his story told by his beautiful mother, Giandrea (my niece).

Zyair was born with a rare heart condition called Artretic pulmonary valve, dysplastic tricuspid valve with plate-like pulmonary atresia and severe pulmonary regurgitation. For those of you that are not familiar, this is a condition in which the pulmonary valve does not form properly. It allows blood to flow from the heart to the lungs to get oxygen. The tricuspid valve is leaky, which puts increased pressure on the heart, causing enlargement and many other problems. I’ve always correlated it to a car (misfiring). This defect requires medication at birth to stay alive and eventually intervention or surgery a few hours to a few days after delivery. There are a cardiac team and many doctor appointments for follow-ups throughout life.

I’ve quickly learned what it means to be a mother, and how I want to save Zyair from the world. I work to be the best version of myself for him. He gives me a reason to continue to keep the faith in the midst of this storm. He is truly everything to his dad and me.

Zyair is now ten months and has been at Luries Children's hospital since birth on 01/18/22. An attempt for discharge resulted in two days at home on Thursday, 11/10/22. He proceeded with critical readmission on Saturday, 11/12/22, with de stats of 40% oxygen, a fever of 107 and a severe gray color causing collapsing. He was transferred by ambulance from the Franciscan hospital (5 minutes from our home) to Luries, what seemed to be the longest and most traumatizing wait of our lives. Diagnosed at that time with Rhinovirus & aspiration pneumonia. As for a typical baby with a typical virus, they can get through it at home; our heart babies suffer quite a bit and often need extra support to push through.

Zyair has undergone four major heart surgeries. The last one is a Starnes procedure, which he’s currently working off of one side of his heart. He is expected to have another major heart surgery called Bi ventricular repair in Boston at the Children's Hospital, and we are hoping it sticks this time. We have not yet received a surgical date, but we are preparing for early next year after his first birthday.

He is currently completely Trach and ventilator dependent with complex care. At home, he will require 24-hour nursing to limit respiratory compromise. We are working towards another possible discharge to bridge the Gap until his next surgical intervention. However, due to the state's rules for nursing of 40 hours a week, this strains us physically, mentally and emotionally. Our continuous prayers are to hold on to God's unchanging hand and see him through to the finish line. Thank you for allowing me the opportunity to share our story. With more awareness and a community-backed behind congenital heart disease, I believe we will be able to touch more lives like ours. This newfound way of life!!