There are a number of different surgical techniques that can be used to treat congenital heart disease. Some of these are explained below.
A catheter, similar to the tube that is used during diagnosis, is inserted into the heart and tools are passed down the catheter to repair the heart defects.
The advantage of this type of surgery is that it's minimally invasive, which means that your child will not have to have open heart surgery.
Open heart surgery
For more serious types of heart defects, it may be necessary to operate directly on the heart.
During open heart surgery, the heart may be stopped and a machine used to pump blood around your child’s body (bypass machine). An incision is made in your child’s chest so that the heart defects can be surgically repaired, or damaged parts of the heart, such as the valves, can be replaced.
In more serious cases of congenital heart disease, the heart may be too damaged, and the child too ill, for corrective surgery to be safely carried out. In this circumstance, their heart may have to be replaced with a donated heart.
If your child requires a heart transplant, their details will be placed on the National Transplant Database (NTD). Depending on the condition of your child’s heart, it may be necessary to keep them in hospital in order to support the function of their heart until a donated heart becomes available. Machines, such as the ventricle assist device (VAD), act like an external mechanical heart, and can assist in pumping blood around the body.
Priority for heart transplants is based on clinical need, rather than on a first-come-first-served basis. If your child is in a very unstable condition, they will be prioritised whereas more stable children will have to wait for a longer period of time.
Once a donated heart of the right size and blood group becomes available, you will be contacted by the transplant team and asked to go to the transplant unit as soon as possible. You may be given a bleeper so that you can be contacted as soon as possible.
Find out more about heart transplantation on the British Heart Foundation website.
Treatment for common types of congenital heart disease
Specific treatments for the most common types of congenital heart disease are described below.
If your child is diagnosed with a ventricular septal defect (VSD) or an atrial septal defect (ASD), the recommended treatment will depend on the size of the defect.
If the defect is small, a policy of ‘watchful waiting’ may be recommended, where your child receives no immediate treatment but their health is carefully monitored. This is because 90% of small defects will close as the child grows older.
In cases of mild to medium-sized defects, it may be possible to seal the defect using a catheter. The catheter is guided to the site of the hole, and a specially designed mesh is passed through the catheter to seal the defect.
In cases of medium to large-sized defects, open-heart surgery may be required. This involves a patch being stitched directly over the defect.
If your child is diagnosed with a stenosis (a narrowing one of their valves) the treatment that is recommended will depend on the extent of the stenosis and if they are symptomatic.
In mild cases, a policy of ‘watchful waiting’ may be recommended. Medication that lowers blood pressure may also be recommended to reduce the strain on your child’s heart and lungs.
In more serious cases of stenosis, a catheter can be used to widen the valve. A small balloon is passed up through the catheter and then inflated to widen the affected valve. This is known as a balloon angioplasty. Once the valve has been widened, the balloon is removed. Sometimes, a metal coil (stent) is used to keep the valve widened.
In more serious cases of stenosis, it's sometimes necessary to replace the valve using open heart surgery. Replacement valves can be obtained from human donors, or made from artificial materials, such as titanium, or taken from pigs and modified for human use. Pigs are used because their hearts are the most similar to the human heart.
For people who are too ill or weak to withstand the effects of open heart surgery, a catheter approach can be used. The catheter is passed through a blood vessel in the groin and up into the heart. A replacement valve is passed through the catheter and into position.
Patent ductus ateriosus (PDA)
Many cases of patent ductus ateriosus (PDA) can be treated shortly after birth, using medication.
Two types of medication - indomethacin and a special type of ibuprofen - have been shown to effectively stimulate the closure of the duct that is responsible for PDA.
If a PDA does not respond to medication, a catheter can be used to seal the duct with a metal coil or plug.
Tetralogy of Fallot (TOF)
Babies born with Tetralogy of Fallot (TOF) who are experiencing severe symptoms of breathlessness may require emergency surgery such as a Blalock-Taussig shunt (a BT shunt).
During a BT shunt, an artery is diverted (or shunted) into the lungs so that a supply of oxygen-rich blood becomes available. Further open-heart surgery is then recommended when the baby is old enough to withstand the after-effects of surgery. During open-heart surgery, the defect between the ventricles is sealed and the pulmonary valve is widened.
Transposition of the great arteries (TGA)
Transposition of the great arteries (TGA) will require open-heart surgery, which is usually done shortly after your baby is born.
A surgical technique, known as an arterial switch, is usually used to treat cases of TGA. During an arterial switch, the affected arteries are cut and reattached to their correct position on the other side of the heart.
Congenital heart disease in adulthood
About 80% of children with congenital heart disease will survive into adulthood. Living as an adult with congenital heart disease involves a new set of challenges. Some adults will require specialised care.
Routine medical procedures, such as giving birth or having a general anaesthetic, will need to be closely supervised by specialist staff with experience in treating adults with congenital heart disease. There is also the risk that previous heart surgery, such as the insertion of a replacement valve, will fail and that further surgery will be required.
Due to these factors, it's recommended that older teenagers register with a specialised adult congenital heart disease clinic. The clinic will be able to provide regular check-ups and assessments, liaise with other specialised medical services as required, and provide on-going support and advice.
Your GP or treatment team can give you more information about services in your area for adults with congenital heart disease.