When Children Need Surgery for Congenital Heart Defects | Patient advice

A lot happens before a baby comes into the world crying.

Along with its head, shoulders, knees and toes, complex organic development takes place that allows a baby to take its first breath and blood to circulate throughout the child’s body. “While the fetus is still in utero – the heart begins to form during the first two weeks of gestation and is almost fully formed – at least all the basic components are in place – by around 49 days, although everything continues to undergo maturation and some sort of final regulation to get everything in the right position,” says Dr. Jeanne James, chief of cardiology and medical director at the Herma Heart Institute at Children’s Hospital Wisconsin.

Most of the time, when it comes to the heart – as with other organs and body parts – everything goes well, which is not surprising considering all that has to happen in nine months. However, in some cases, children are born with congenital (present at birth) heart conditions, including structural defects. James notes that the heart begins as a single tube. “Think of it like a tube sock with a hole in the bottom. … The tube has to bend properly and form the valves properly to go from a tube like this to a four-chambered heart,” she says about the complex muscular organ “Honestly, from my perspective as a cardiologist, I think it’s almost amazing that someone’s heart becomes normal because of the amount of complicated things that have to happen very early in development for a normal heart to result.And in fact, heart defects occur in approximately nearly 1 in 100 patients – it is the most common birth defect.

Many of these babies are essentially born with a hole in their heart – which can be as dramatic and disastrous as it sounds if left undetected and untreated. Yet experts say early intervention isn’t always necessary either, because organ development continues after birth. There are a variety of congenital heart conditions that children can face, and although early diagnosis (sometimes while the child is still in utero) is essential, it does not necessarily precipitate medical intervention in the first weeks of life. the life of a child. “Not all are conditions that require treatment during the neonatal period or even during childhood. Some of these are conditions that children grow up in,” says Dr. Stephanie Fuller, a cardiothoracic surgeon at Children’s Hospital of Philadelphia. “For example, an atrial septal defect – a small hole in the heart between the upper chambers of the heart…it’s something that a child can sort of grow out of, or it becomes relatively insignificant to them when they reach adulthood. .”

In many other cases, however, treatment is needed – and surgery or another procedure to close a hole in the child’s heart, for example, is needed. A congenital heart disease that some children face is called tetralogy of Fallot. It involves a combination of problems including a hole between the lower chambers of the heart – or ventricular septal defect – and an obstruction of blood flow between the right ventricle of the heart and the pulmonary artery, which carries blood to the lungs – or pulmonary stenosis. As a result, oxygen-poor blue blood is flushed out to the body. “These kids are getting our attention because they’re turning blue,” says Dr. James Tweddell, director of cardiothoracic surgery and co-executive director of the Heart Institute of Cincinnati Children’s Hospital Medical Center. Babies take on a bluish tint, the degree of bluishness depending on the obstruction of blood flow. “Like most congenital heart diseases, it’s a spectrum. Thus, babies with severe obstruction will need surgery during the neonatal period,” says Tweddell. “The way we fix that is we relieve the obstruction between the right ventricle and the pulmonary artery, and we plug the hole between the pumping chambers.”

Although complete repair of the defect is usually done early in a child’s life, in some infants a shunt or small tube is sewn between the aorta – the body’s main artery, which delivers oxygenated blood – and the pulmonary artery to ensure adequate blood flow. flow to the lungs, according to the American Heart Association. When a complete repair is carried out later, the shunt is closed.

In other cases, isolated problems like a hole between the heart’s chambers — such as a secundum atrial septal defect, the most common type of atrial septal defect — can be repaired with a less invasive procedure rather than requiring open-heart surgery. . In a cath, or catheterization, laboratory, a clinician passes a catheter, or thin tube, through the patient’s body to the child’s heart. “Rather than having their chest open, they will just be accessed through a blood vessel usually in the groin, and they will be channeled [in] a small expandable device,” says Tweddell. This will be opened to close the hole between the atria, the upper chambers of the heart that receive or collect incoming blood. The device, in this case, is called an atrial septal defect obturator. “The most commonly used is one called an Amplatzer device; and they are very ingenious devices,” he says. “They look like a finely woven basket [shaped] like two Frisbees connected by a can of tuna in the middle; and you can crumple them all up and blow them up so that one disc is on one side of the defect and the other disc ends up on the other side – and that’s how they plug the holes.

Naturally, parents of children diagnosed with any type of congenital heart disease are usually overwhelmed. Besides, they’re panicked, says Fuller. “I actually think it’s a very difficult position to be a parent or a grandparent, mainly because you’re inundated with a lot of new information. A lot of it is very technical information” “, she says. Where doctors have spent years understanding the complexity of various heart defects and the options for treating them, parents are often given a crash course at a critical moment. “You are suddenly forced to learn this within hours or even days of when your child might need life-saving surgery,” Fuller says.

For this reason, a large part of what pediatric cardiologists do is fill the information gap by explaining to parents what is going on. That said, experts also advise parents to do their homework — consulting reputable online sources, from the AHA to respected medical centers of excellence — and to have an open and ongoing dialogue with healthcare providers about the short-term and long-term care needs and options. This goes for everything from risks and benefits at the time of treatment, as well as lifestyle considerations for the child – such as whether their activity needs to be restricted at any time or in any way due to a cardiac disease. “My advice [to] parents would ask a lot of questions,” says James.

Fortunately, when time and understanding are essential to make informed treatment decisions, diagnoses are sometimes made in utero, depending, for example, on the nature and severity of a heart defect. In other cases, through careful monitoring of infant health, the problem is identified at the time of birth or long before an operation is imminently needed – or in cases where surgery or further procedure is not necessary at all.

In addition, the prognosis of children with heart defects has improved significantly, so one of the main objectives today, according to experts, is not just to save lives, but the quality of life of patients until ‘adulthood.

“What I like to say to parents is that we’ve come such a long way in pediatric cardiology as a field since the 1960s, when we really had nothing to offer a child born with a heart defect. until today, in the 21st century really, most children live with their heart defect,” says James. Children may need medication or other ongoing care and, even with surgery or d Other treatments, some have activity restrictions that limit things like participation in sports, among other ways that heart disease can affect their daily lives.Yet heart defects often don’t have a significant impact at all. long-term.”They can have surgery which can either be curative surgery,” says James, “or palliative surgery, which doesn’t necessarily completely correct the blood flow but may s keeps the heart working well enough so that the child can go to school and play football and be on the swim team and have a normal, healthy and fulfilling life.