What kind of treatment will your child have?
The type of treatment recommended for your child will depend on the type of condition your child has, the severity of the condition, the age of your child, how serious the symptoms are, and any other individual considerations that might influence the condition and its management.
The doctor might advise "watchful waiting" — not actively treating the condition right away but watching to see how it progresses. Some conditions go away on their own without treatment. Other conditions may need treatment right away. The management of some conditions may require the use of drugs, while others need surgery or other interventions.
What different types of treatment are there?
Most treatment aims at correcting a problem, by way of drugs, surgery, or other approaches. When it comes to cardiac conditions, doctors take a very aggressive approach to helping a child as best they can.
Surgical treatment is aimed at correcting blood flow, or whatever the relevant problem associated with the congenital heart disease is, to help the child live and grow. Some surgeries are referred to as palliative surgery or palliation, which simply means easing a condition in the absence of being able to remove or fully correct the cause. Examples include the Norwood and Fontan procedures. Some conditions can be improved or corrected by an interventional procedure done by cardiac catheterization without any surgical incision.
In cases where surgery or drugs will not be able to adequately improve the child's condition, the approach will focus on relieving symptoms and improving a child's quality of life. This is called palliative care, supportive care, or compassionate care. This generally involves a small minority of children who are extremely ill.
What questions should you ask the doctor about treatment?
Here are some questions you should ask the doctor about the treatment:
- What will this treatment do for my child?
- Will the treatment correct the problem?
- What kinds of complications might there be?
- Who will do the surgery?
- How many of these procedures are done at this hospital each year?
- Why is this the best approach?
- How will you minimize pain/discomfort for my child?
- How long will it take?
- What about blood transfusions?
- What materials will you be using during surgery?
- How long will my child be in the hospital?
- What happens after the procedure?
- What medications will my child be on?
- What is the long-term outlook for my child?
- What will the effect of all this be on my family?
What risks are associated with treatment?
There is a risk involved with every treatment. The doctors are required to tell you the kinds of risks your child may be facing by undergoing a given treatment. What they tell you may sound very frightening. Keep in mind that the doctor, and the entire team, is very experienced. The surgeon who will repair your child's heart defect, for example, has successfully done the procedure many times before. Your child will be in good hands. While it is hard to hear about potentially very serious complications, it is important to remember that the odds of something unexpected happening are small.
How do you know the doctor is capable?
Heart conditions are generally quite complex. To become a cardiologist requires many years of study, hands-on training, and credentials confirming ability. Years of practice are spent honing expertise with the aid of more experienced doctors. There must also be proof of participation in continuing education to keep knowledge current. At paediatric cardiac centres the cardiologists are extremely capable.
Depending on your child's specific condition, you will be referred to the doctor with the most experience in treating that condition. You can rest assured that you will get exceptionally competent care.
Of course, there may be instances where you don't necessarily like the doctor as a person or his particular style. Personalities can clash. It is important to remember that professional competence has nothing to do with interpersonal skills.
What questions should you ask the doctor about himself?
Here are some questions you can ask the doctor about himself:
- What are your medical qualifications and how much experience do you have?
- How many of these surgeries have you done? Have they been on children the same age as mine?
- What is your success rate for this procedure?
If surgery is involved, will the same doctor do it?
Not usually. Most surgeons specialize in certain areas, so the doctor who diagnosed your child and who will take care of your child before and after surgery (the medical doctor) will refer you to the surgeon or surgical doctor who will do the operation and has lots of experience doing this procedure.
How do you know the treatments are sound?
The treatments used to manage congenital heart disease have been tested in clinical trials and used regularly for years. They have been found to be the most effective options available. Once a drug or treatment has been rigorously evaluated, presented at medical meetings, and published in "peer-reviewed" medical journals, it becomes adopted by the medical community. This is an ongoing process as researchers are continually refining and testing approaches.
Paediatric cardiology through the years
Over the years, wonderful advances have made a world of difference for children with heart conditions. The history of paediatric cardiology is a real success story. This subspecialty was established in 1961, with the recognition of what a serious effect heart conditions have on children, particularly those under the age of one.
Over the past 50 years or so, advances in this field have been outstanding. Both the quality and effectiveness of drugs, surgical and catheterization techniques, surgical support, and diagnostic techniques have improved so much that outlooks are much better for children than they were in the early to mid twentieth century.
Today, almost all children with a heart condition (95%) are candidates for some form of treatment. The mortality rate for these infants has dropped from 50% to about 15%, meaning that about 85% will grow into adulthood. This means that a whole new area of treatment has opened up for adults with congenital heart disease.
Here are some highlights from the history of paediatric cardiology:
- Tetralogy of Fallot was first clinically described and diagnosed by Fallot in 1888.
- A female Canadian physician, Dr. Maude E. Abbott, wrote the very first book on paediatric cardiology in 1936. In Atlas of Congenital Heart Disease she describes and classifies a variety of heart abnormalities.
- Closed heart surgery got its start in the late 1930s and early 1940s.
- In the 1940s, Drs. Blalock and Taussig came up with a procedure that's now known as the Blalock-Taussig shunt, or "BT" shunt. It is still used in the initial treatment of several conditions.
- In 1953, Dr. Gibbon repaired the first atrial septal defect using cardiopulmonary bypass and an oxygenator.
- Open heart surgery made its debut in the 1950s.
- In the mid-1960s, Dr. Rashkind developed balloon atrial septostomy (the Rashkind procedure) which is still used today.
- In the 1970s, prostaglandin became available to keep the ductus arteriosus open while babies are awaiting surgical or catheter procedures.
- In the 1970s, echocardiography was developed.
- In the last decade, a great deal of focus has been on the diagnosis of heart disease before birth.