Macie was born with Hypoplastic left heart syndrome (HLHS) and 1P36 Deletion Syndrome. These two health conditions combined have created an onslaught of health complications throughout the years. Macie has had 5 huge cardiac surgeries throughout the years that required multiple blood transfusions to get her safely through the surgery alone.
Macie had to receive a Ventricular Assist Device (VAD) while on the heart transplant list. This device was our only way for her to survive while awaiting a heart compatible for her. This surgery alone, along with the intense complications that came with it, required many blood transfusions. It felt like daily she was having yet another transfusion just to get us safely to the next day. She went through her donor specific transfusions within no time leaving us needing blood from strangers kind enough to give back. During the wait on the transplant list alone Macie had more transfusions than I ever thought she’d have.
I remember the intense fear there would be a shortage of blood. I can’t even begin to count the amount of transfusions Macie has gotten throughout the years to save her life yet it never ends the fear there will be more of a shortage. Unfortunately, it simply isn’t something people think of when a surgery or extended hospital stay occurs. With every extended stay you run the risk of a transfusion being required due to the amount of labs that are run to keep your child stable. I can assure you it’s a terrifying thought wondering if there will be too much of a shortage that your child might not receive life saving blood.