How long
will my child have to wait for a donor heart to become
available?
Waiting is one of the most difficult
aspects of transplants. Texas Children's heart
transplant team can't give you an exact date; it may
take days, weeks, months or even years before a donor
heart that matches your child's needs becomes
available.
What
status will my child be on the list?
After a patient is evaluated and found
to be a suitable transplant candidate, the appropriate
forms are completed to allow the patient to be placed
on the national United Network of Organ Sharing (UNOS)
cardiac transplant waiting list. A patient can be listed
at one of four different statuses.
- Status 1A
is reserved for the sickest patients who require transplants immediately. These patients
typically are in the intensive-care unit, possibly on an assist device
or on multiple IV drugs for
support, less than 6 months old or have life-threatening
arrhythmias.
- Status 1B
may be a child who is on a single IV inotropic drug, has growth
failure (height and/or weight less than or equal to 5
percent on the growth chart), is on outpatient 2 inotropic therapy,
or is a fetus in-utero with known cardiac
disease that will require transplantation at the time of
birth.
- Status 2
includes all other patients who need cardiac transplantation.
- Status 7
are patients who are temporarily inactive on the
transplant waiting list for one reason or another such as
infections, financial problems or unstable conditions. These
patients do not accrue time at this status, but they do not
lose the time they have accrued.
Changes in a
patient's UNOS status are made by the
transplant service based on his or her clinical condition.
If the patient’s medical condition
changes, the UNOS status is reassessed and updated.
Hearts are allocated to children based on blood type
and body size and then to the child in the highest
priority status. During the waiting period, families
must carry pagers so they can be immediately located at
all times.
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What
mechanical devices are available to my child while he
or she waits for a donor heart to become available?
At Texas Children's Heart Center,
ventricular assist devices (VAD) are available to
support patients whose hearts requires help to
generate an adequate cardiac output.
For patients
younger than 5, the Medtronic®
Biomedicus VAD, a short-term, non-pulsatile,
centrifugal-flow ventricular assist device, is
available. For patients ages 5 to 16 years,
Texas Children's Hospital is approved for use of
the MicroMed DeBakey VAD Child®, which is a long-term,
non-pulsatile, axial flow ventricular assist device.
It has received the Food and Drug Administration (FDA)
Humanitarian Device Exemption (HDE) approval and is
the first VAD approved by the FDA for use in children.
The Berlin Heart® is a long-term pulsatile ventricular
assist device (VAD), which can provide support as a
left ventricular assist device (LVAD), a right
ventricular assist device (RVAD) or a biventricular
assist device (BiVAD) for patients whose conditions
can no longer be managed with medication therapy. The Berlin
Heart comes in
four pump sizes and can be used in infants through
adult-sized people. Although the Berlin Heart has not received
FDA approval, the FDA has allowed its use on a
case-by-case basis because it is one of the only proven long-term assist devices available
for use in infants and small children.
For adult-size
patients, the Thoratec®
paracorporeal VAD, a long-term, pulsatile-ventricular
assist device is available. Designed for versatility,
this VAD system can provide left, right or
biventricular support to adult patients. These long-term devices enable the patient
to be mobile and perform many routine activities
while waiting for bridge to recovery or bridge
to transplantation.
We also offer extracorporeal
membrane oxygenation (ECMO) or extracorporeal life
support (ECLS) for individuals requiring both cardiac
and pulmonary support.
Why does
my child need all those medications?
The medications prescribed to your child are as
important as the new heart, and parents must be
willing to strictly administer medications on time. The
medications each child requires are individual, and
over time certain medicines may not be necessary. You
and your child must understand that not taking
medications is not an option and could result in
serious medical complications.
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Will my
child's new heart last for his or her lifetime?
The life expectancy of each transplanted heart varies,
but most children require retransplantation at some
point in their adult lives due to coronary artery
disease. For reasons not currently understood by the
medical community, a transplated heart develops coronary
artery disease. Your child will have to have his or
her cornonary arteries examined in the cardiac
catheterization lab on a yearly basis.
Will my
child be able to live a normal life?
With the exception of routine visits with the heart
transplant team, most children who have heart
transplantations go on to live normal lives after the
initial post-surgery period.
