Moms and dads with a child on the

heart transplant waiting list hear

this one all the time, often from

friends and family with the best

intentions.

It’s a sign of not really knowing how

organ donation works. Heart

transplants are not a scheduled

procedure. We never know when a

donor heart will become available for

our patient.

Facebook Responders say:

“I would often say that [the heart] is still beating in someone’s body, and

they need it,” one responder wrote. “It was a good reminder to myself

when I was getting impatient as well.”

Just because the surgery is

over, doesn’t mean your child or your

family can carry on like normal.

In fact, “normal” is both a distant

memory and a long-term goal for many

of our heart transplant families.

Facebook Responders say:

“[Our child] may have more energy and great blood flow after

transplant, but he doesn’t get physical strength back so quickly,” a

Facebook responder wrote. You could also share the developmental

milestones your child has reached—like learning to walk, starting

school or taking up a new sport.

A heart transplant is very

different from standard

open-heart surgery.

The body’s immune system

has to learn not to attack the

new heart, which it may

instinctively view as a foreign

organ.

Facebook Responders say:

Explain that the new organ has to successfully function in a body it’s not

used to and after heart transplant, frequent checkups are necessary to

make sure everything is working the way it should—the new heart AND

the medications.

This is a tough one.

A number of parents face this

harsh question. One couple

said a reporter once blindsided

them with this question on

television.

Facebook Responders say:

“My first instinct was to get very angry at her,” wrote the responder who

shared this story. “But then I echoed what the head of our transplant

team always says—we did not cause someone else’s child to

die...Perhaps by donating their child’s organs, there is some small

measure of comfort brought to their family.”

Many people hear this

statement after proudly

posting pictures of their

“zipper,” the scar that

remains after heart surgery.

It is a scar, but it represents

much more.

Facebook Responders say:

”People don’t realize

what that scar represents

and the changes it

caused in me—more on

the inside than out,”

wrote a Facebook

responder who had

undergone a transplant.

Many people who ask this

question don’t know that the

donor and recipient families

may not know anything about

each other.

While some welcome that

unfamiliarity, others may find it

frustrating, especially when you

want to know those answers

yourself.

Facebook Responders say:You could explain that you don’t

have that info because

coordinators working behind the

scenes on behalf of the transplant

recipient and organ donor keep

each family’s identity private on

purpose.

If both families agree to make

their information available at

some point in the future, then the

families can learn more about

each other. Not everyone makes

that choice, though.

Sigh. This belief is absolutely

not true, but common. It’s

particularly difficult for families

who give thanks daily for their

organ donors. Nobody—from first

responders to emergency

surgeons—tries any less to save

a person because he is an organ

donor. First responders and

medical specialists want to save

lives. And in a real emergency the

medical team may not have any

information about your organ

donation status until they have

done everything they can to save

you.

Facebook Responders say:

One Facebook responder summed up her reason for

choosing to donate: “We no longer need our bodies after

we die. If someone else can have a better quality of life

from the organs or corneas I leave behind, I’m all for it. It’s

possibly the only way we can help one another after we

die.”