Cardiac Services
Listening Events
Frequently asked
questions
General Questions
If you are diagnosed with a congenital heart
condition, are you ever considered 'fixed'?
Current thinking is that whilst surgery is able to
repair the heart and maximise potential, a person with a congenital
heart issue will generally need long term support in some way so
would not be classed as being 'fixed'. This is particularly
important for patients who may need to be completing applications
for support such as Disability Living Allowance or Personal
Budgets.
Has a test for Kawasaki Syndrome been
developed?
There is currently work under way in San Diego but a
definitive test has not yet been identified.
Questions about surgery
My child's chest is higher on one side than
the other after their surgery. Is this a
problem?
Chest imbalance is not uncommon after surgery.
It is linked to ongoing heart development and physical growth of
the breast bone. It usually settles in adulthood and becomes less
noticeable. If this becomes noticeable beyond the 12 weeks
following surgery, it is unlikely to be a medical issue. If
there are cosmetic worries when a child is older, thoracic
remodelling can be discussed. If there is any evidence that
the imbalance may be due to swelling, indicating that the heart is
working harder than expected, please contact your consultant.
Will an unbalanced chest become worse if
opened again for further heart surgery?
This is unpredictable. Because of the risk of
infection in open heart surgery, the team will bring the chest
together as quickly as possible at the end of the procedure to
minimise this risk. This may mean that there is still an
imbalance after further surgery.
My child's ribcage seems to click - is that
normal after surgery?
During open heart surgery, it is the breastbone that
is cut, rather than the ribs as this is solid bone which can be
stitched or wired together. When it is closed, the surgeons
usually use sternal wires which are likely to stay in place for
life. The surgeons need to ensure the bond is tight enough to
keep the bone together but not so tight that the wires might snap.
A click in the sternum directly after an operation may suggest
infection, but if later, is more likely to be the result of the
body responding to the wires by creating fibrous nodules to cover
them, which is not unusual.
Is it safe to perform Cardio-Pulmonary
Resuscitation on a child who has had heart surgery?
Yes if it is needed. The heart will be healed
after 6-8 weeks but if it is needed earlier, it needs to be given
as the risk of not performing CPR when needed is almost certain to
be greater.
What are the long term effects of
stents?
Stents are helpful to the cardiac surgeon as their
use may avoid a number of additional operations. Stents
don't grow of their own accord so need dilating as your child
grows, and sometimes replacing with a new stent, particularly if
the 'rinds' which the body lays down over them need to be squashed
back. A small number of stents are expandable to a significant
extent but may not be suited to all procedures.
Stents are rigid but blood vessels aren't,
particularly in the case of the aorta as it runs up the body.
There is a small risk of rubbing which is why the vessels need to
be monitored to pick up any signs of possible problems.
Is growing valves from stem cells a reality
yet?
Not yet but the team are looking at them in Bristol,
as part of research led by Mr Caputo. Research focussing on a
dissolvable lattice-work within which the patient's own cells can
grow is showing promise and the team are now looking at how they
can use this to create a valve. The results so far have been
variable so it is likely that this will take a further 20-25 years
on current estimates.
What other valve options are
there?
This is one of the most difficult conversations with
parents and patients as there is no perfect valve. A
mechanical valve will be most long lasting but will require the
patient to take Warfarin for the rest of their life. For
those who do not wish to do this, a tissue valve may be an option
but this is likely to wear out. However, improvements in
inserting valves by catheter now mean that bypass or open heart
surgery is less likely to be required which reduces the risks
associated with multiple large scale surgeries.
Medication information
Getting medication from the GP can be
challenging - how can we make this easier?
One of the challenges is that the majority of routine
medicines we use are not licensed for children due to the system
complexities involved, although they are quite safe and are used as
part of standard practice. There is a relatively short
list of medicines used for children following heart surgery which
should make it straightforward to produce a standard list.
However, strengths can be confusing for parents and GPs as these
can be variable. It may help to take you medications list to
your chosen pharmacy, as soon as you are able to reorder, to give
enough time for them to order the right products. You may
find it easier to use an independent pharmacy which may have a
wider range of suppliers.
Is there an app to help parents keep track of
and manage prescriptions?
My heart app is an American based symptom tracker but
does not appear to offer a medication list. If anyone knows
of anything that will do this, please let us know.
How should I manage my child now they are on
blood thinners?
Parents are understandably anxious for their child
when they are faced with taking blood thinners for life, but with
good regulation there is no reason for your child not to do the
majority of activities they would like to try. In a few more
complex cases, some activities may be inadvisable but your
consultant will discuss this with you if it is relevant.
Parents report that in the majority of cases, they are able to
allow their child to get on with normal activities and manage any
outcomes appropriately. If you are worried about your child
after a fall or injury, seek advice immediately.
Do many parents use helmets for children on
blood thinners?
Not many parents reported in Gloucester that they
choose to do this but it is ultimately up to a parent to decide on
what is best for their child.
Emergency care for your child
What should we do in an
emergency?
If you are not confident that your child is well,
seek help. If they are acutely unwell, contact 999 to be taken to
the most appropriate hospital. This is most likely to be your
local hospital. This is the right thing to do in any
situation where there is evidence that their airway, breathing, or
circulation is compromised, regardless of any underlying
condition.
Where do we go in an emergency?
There is no need to drive to Bristol unless this is
the decision made by the ambulance team in consultation with the
doctors. Taking your child to the closest hospital ensures
you minimise the risk of delay due to traffic or other
incidents. The medical team will be able to contact Bristol
for advice if necessary.
Should we have an emergency
plan?
If your child's condition is particularly complicated
or their heart condition is part of an underlying condition which
includes other difficulties, you may have a plan for what to do in
an emergency. Otherwise, attending the local emergency
department with your most recent clinic letter should be enough for
the team to be able to respond appropriately.
If it's not quite an emergency should I
worry?
Any parent needs to act within their own boundaries
of confidence, which may change as they get used to living with a
child with a long term condition. Parents should never be afraid to
seek advice if they feel that something is outside of their own
comfort zone. They can telephone the cardiac ward in Bristol
where there will always be a nurse or doctor on call, or contact
their cardiologist or Clinical Nurse Specialist in office hours.
Local paediatricians can also offer advice, and may have arranged
open access to your local children's unit where this is
available.
Holidays
What if my child is unwell on
holiday?
You may like to keep your clinic letters in a folder
and take it with you for immediate access if there is a
problem. Alternatively, just take your most recent clinic
letter for reference.
School
My child is starting school or a new social
club or activity. What do they need to know?
Always tell any teacher, group leader or activity
co-ordinator that your child has a heart condition. However,
this may not necessarily limit their participation except where you
have been given specific advice by your consultant.
What should I tell their teachers that they
are allowed to do?
Your consultant will help you with specific guidance,
but once your child has recovered, they will usually moderate
themselves and stop when it feels appropriate. You should
encourage your child's school to support this decision making and
talk to you if they have concerns. Teachers may be over or
under cautious, depending on their experience, so good
communication from the start will help you get it right for your
child.
