That big “T” word that makes everyone’s heart flutter just a bit. It’s scary, it’s unknown but when it’s spoken out loud, you just know, something is wrong.

Transplant. There I said it. Did your heart skip a beat? Mine does, every time and I’ve been saying it a lot lately. So let’s talk about it, let’s come to an understanding that as much as this is scary, it’s hope filled too.

In a traditional heart transplant, the entire heart is removed and replaced with a healthy donor heart. This is usually done when the whole heart is failing and can no longer pump blood properly. The patient is put under general anesthesia, and surgeons disconnect the major blood vessels, take out the damaged heart, and sew in the new one.

Once everything is connected, they help the new heart start beating. After surgery, the patient stays in the hospital for recovery and must take lifelong medications to prevent their immune system from attacking (rejecting) the new heart.

A partial heart transplant, also called a valve-sparing or domino transplant, works differently. In this type, only part of the donor heart is used—usually a specific structure like a valve or artery. This can be helpful for children especially with Truncus who have heart defects in just two areas rather than full heart failure. Surgeons carefully replace the damaged parts without removing the entire heart. Because the patient’s own heart stays mostly in place, this surgery can reduce the risk of rejection and sometimes allows for better long-term growth and function, especially in younger patients.

Katja was born with a heart defect that affects both her aortic valve and her pulmonary. Though her left ventricle is under a lot of stress, her actual heart is working great. Katja’s pulmonary valve has always been replaced with artificial conduits that don’t grow with her (why she’s needed so many surgeries) but her last two surgeries have actually been do to her aortic valve (Ozaki) failing. This time is no exception. It’s her Ozaki failing again.

Katja’s PHT would remove all the artificial stuff in her heart and replace it with living aortic valve/root and pulmonary valve/vein. It would give her a “normal” heart without all the artificial stuff that’s failed. Of course it’s not that simple.

Putting any tissue in her that isn’t her own comes with risks. Though research shows that the risk of valve rejection is low (much lower than a whole heart) and these kids are able to take much lower amounts of immunosuppressant therapy. There is always a risk. These drugs have a lot of side effects and problems. Unfortunately it’s not something you can just stop.

It’s a battle we’ve been weighing for weeks now and after so many surgeries, if we can finally give Katja a chance at having normal heart function, it’s honestly worth those risks.

All we can do is hope her body cooperates and doesn’t reject the gift she’ll hopefully receive soon.