FAQs

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.