How Is Surgery Used To Treat Congenital Heart Defects In Infants And Children
Children are not just small adults, and surgery to treat a pediatric heart problem is very different than it would be for an adult. Pediatric heart surgeons are specially trained in the delicacies of treating hearts in small bodies that are just starting to grow. They typically work with a team that includes pediatric cardiologists and other pediatric heart specialists, who are all expertly trained in taking care of babies and children with congenital heart defects.
The types of surgeries for congenital heart disease vary widely, ranging from fairly simple and straightforward to highly complex, all depending on the patients heart abnormality and condition. They range from fairly minor, minimally invasive procedures, to open heart surgery using a heart-lung machine , and some need multiple operations over many years.
For some problems, patients can avoid surgery with the help of an innovative, nonsurgical treatment called cardiac catheterization, which involves making a tiny needle puncture in the skin and inserting a thin tube through a blood vessel to the heart, where the doctor can fix the problem. This procedure, performed under anesthesia, requires no incision and a much shorter hospital stay. It has been used to close atrial septal defectsholes between the right and left upper heart chambersamong other things.
Hopeful Future For Infant Surgeries
In the future, babies with HLHS could benefit from a newly developed hybrid strategy that may compensate for the disadvantages of the standard, three-stage palliation procedure, according to an August report in The Journal of Thoracic and Cardiovascular Surgery, the official publication of the American Association for Thoracic Surgery .
This procedure allows surgeons to defer the more complicated cardiac reconstruction until the child is older and stronger, and can recover successfully from surgery.
Researchers, according to an AATS press release on the report, examined whether an arterial shunt in the hybrid palliation may be a better source for the pulmonary blood supply than the more frequently used venous shunt.
Dr. David M. Overman is chief of the division of cardiovascular surgery at the Childrens Hospitals and Clinics of Minnesota, in Minneapolis.
In an editorial that accompanied the JTCS report, he wrote that hybrid surgery strategies are currently used only for a minority of patients. He acknowledged, however, that there is a place for hybrid surgery with higher-risk patients.
The impact and advisability of that particular approach, while intuitively resonant, is still an open question, he added.
Ginas advice to parents facing heart surgery for their baby is keep asking questions.
What Causes Congenital Heart Defects
If you have a child who has a congenital heart defect, you may think you did something wrong during your pregnancy to cause the problem. However, most of the time doctors don’t know why congenital heart defects develop.
Heredity may play a role in some heart defects. For example, a parent who has a congenital heart defect may be more likely than other people to have a child with the condition. In rare cases, more than one child in a family is born with a heart defect.
Children who have genetic disorders, such as Down syndrome, often have congenital heart defects. In fact, half of all babies who have Down syndrome have congenital heart defects.
Smoking during pregnancy also has been linked to several congenital heart defects, including septal defects.
Scientists continue to search for the causes of congenital heart defects.
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What To Expect At Home
Your child will need at least 3 or 4 more weeks at home to recover. For larger surgeries, recovery may take 6 to 8 weeks. Talk with your child’s health care provider about when your child can return to school, daycare, or take part in sports.
Pain after surgery is normal. There may be more pain after closed-heart surgery than after open-heart surgery. This is because nerves may have been irritated or cut. The pain will likely decrease after the second day and can sometimes be managed with acetaminophen .
Many children behave differently after heart surgery. They may be clingy, irritable, wet the bed, or cry. They may do these things even if they were not doing them before their surgery. Support your child through this time. Slowly begin to set the limits that were in place before the surgery.
How The Heart Works
To understand congenital heart defects, it’s helpful to know how a normal heart works. Your child’s heart is a muscle about the size of his or her fist. It works like a pump and beats 100,000 times a day.
The heart has two sides, separated by an inner wall called the septum. The right side of the heart pumps blood to the lungs to pick up oxygen. Then, oxygen-rich blood returns from the lungs to the left side of the heart, and the left side pumps it to the body.
The heart has four chambers and four valves and is connected to various blood vessels. Veins are the blood vessels that carry blood from the body to the heart. Arteries are the blood vessels that carry blood away from the heart to the body.
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Returning To Everyday Life
After any serious surgery children can be affected in many different ways. Some children may become more clingy, emotional, quiet or withdrawn. Try to go back to your usual family routine, and talk to your child positively about their hospital stay. Avoid comments such as nasty doctors, scary hospital and so on, as your child will need to come to hospital and see medical staff over the coming years. If things do not improve within a few weeks, please contact the Cardiac Nurse Specialist team who can offer advice and support.
Children should be encouraged to get back to normal activities as they feel able. However, the following should be avoided:
- Being picked up under the arms for six weeks
- Rough and tumble play for six weeks
- Swimming, biking, climbing for six weeks
- Large gatherings and anyone obviously unwell for two weeks
- Play school, child minders, nursery, or school for four weeks. They may need to start back slowly, perhaps half days initially. This varies from child to child so discuss it with the school. If you need a letter for school, please ask the discharging team for this.
If you or your teenager has any questions about recovery, please contact our Cardiac Adolescent and Transition Clinical Nurse Specialist details at the end of this page.
Technology Lessens Surgery Dangers
In an interview with Healthline, Dr. Tweddell, one of the foremost practitioners in this field, said modern technology is making infant heart surgeries safer.
We have better diagnostic imaging, better intra-operative support, and better intra-operative monitoring, he said. Post-operative care is getting more sophisticated, and we are less tolerant of a child that does not appear to be on the right track. We are more likely to get additional studies to see why they are not progressing, and may submit them for reintervention before they get too sick.
On June 30, Tweddell became executive co-director of the Heart Institute and professor of surgery at Cincinnati Childrens Hospital Medical Center. He is the former medical director of pediatric cardiothoracic surgery at Childrens Hospital of Wisconsin in Milwaukee.
With decades of experience, Tweddell knows how to counsel parents whose babies need cardiac surgery, how to involve them, and how to ease their fears.
He said the most difficult part of his job is telling parents of high-risk infants about the dangers of such procedures.
how to convey the risks of surgery without taking away hope but, at the same time, providing a realistic assessment of the risks, he said.
Its not always easy to calm an anxious parent.
If an infant needs heart surgery, parents should consider the depth and breadth of the hospitals program, Tweddell added.
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In The Operating Room
A team that includes the cardiac surgeon, anesthesiologist, other physicians, perfusionists, technicians, nurses, nurse practitioners and physician assistants will perform the heart surgery. While the surgeon performs the operation the anesthesiologist gives you anesthesia and monitors the vital signs.
The team will use a heart-lung machine, which is also known as a cardiopulmonary bypass machine, during open-heart surgery. The heart-lung machine allows the blood to bypass the heart so the heart can be emptied, opened and repaired. The bypass machine removes the bluish blood before it enters the heart, pumps it through a machine that adds oxygen to it and makes it red again, and then pumps the red blood back into the body.
Once the heart-lung machine is working and the heart is emptied, the team will give you a medication to stop the heart from pumping. The surgeon can then open the heart and do the operation. After the surgeon finishes the operation, he or she will close up the heart is close, allow the blood to fill the heart and start the heart’s pumping. Once the heart is pumping normally, the team will turn off and disconnect the heart-lung machine.
Some operations on the blood vessels next to the heart don’t need the heart-lung machine. These types of operations are called closed-heart surgery.
Reducing The Risk Of Endocarditis
Bacterial Endocarditis is a life-threatening infection of the endothelium. This is the smooth surface of the inside parts of the heart, including the heart valves.
Any child or adult can develop BE although it is very rare. People at greatest risk of BE have a damaged heart valve, an artificial heart valve, prosthetic material within the heart or other heart defects.
Infective endocarditis is caused by certain types of bacteria and organisms which get into the bloodstream in large numbers. Once in the blood stream they attach to an area of endocardium which is rough and an infection develops.
There are things you can do to reduce the risk of endocarditis:
- Good oral hygiene. Gum disease and tooth decay can cause infective endocarditis. Your child should clean their mouth and teeth twice a day with fluoride toothpaste and have check-ups at the dentist every six months.
- Body piercing and tattoos should be avoided entirely as they have a high risk of infection.
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Follow Up After Discharge
One of the Cardiac Nurse Practitioners will try to call you within three working days of discharge to see how you and your child are following discharge. Before you leave, please check that we have your correct contact details for you. If you do not receive a call, please get in touch using one of the numbers at the end of this page.
Most children are seen by the doctor within four to six weeks of discharge, but if we need to see your child sooner, we will discuss this with you before going home. If not given to you before you go home, the date and time of the outpatient appointment will be posted to your home address. If you do not receive an outpatient appointment within four weeks of discharge, please contact us.
At your follow up appointment you will be able to discuss the following
- Booking a holiday abroad holiday insurance for your child
- Days out to an amusement park or fun fair
- Strenuous activities or extreme sports
One Familys Heart Surgery Ordeal
One familys experience with infant cardiac surgery has been more difficult and frightening than most.
Gina and Kyle are parents of a baby born missing half of his heart. The defect hypoplastic left heart syndrome appeared on a routine ultrasound when Gina was 22 weeks pregnant.
If untreated, the condition is fatal. Treatment requires either a transplant or a three-step surgical procedure called staged palliation.
In an interview with Healthline, Gina described her ultrasound appointment. Her family was with her when the technician indicated her unborn babys left side of his heart was tiny compared with the right.
Gina said her first reaction: What did I do to cause this? Did I forget to take my prenatal vitamins?
We all started crying. I would wake up in the night crying. I buried my face in the pillow, screaming, No, no, no! Gina recalled. We searched the Internet for answers. I called everyone I knew, practically begging for loving support. We sent emails. We prayed. We reached out to a support group.
Their son, John, was born four years ago. Six days after his birth, he underwent staged-palliation surgery , which is considered one of the recent major achievements of congenital heart surgery.
According to statistics from the University of California, San Francisco, the HLHS survival rate for children at age 5 is about 70 percent and most of those children have normal growth and development.
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Normal Heart And Heart With Atrial Septal Defect
Figure A shows the structure and blood flow in the interior of a normal heart. Figure B shows a heart with an atrial septal defect, which allows oxygen-rich blood from the left atrium to mix with oxygen-poor blood from the right atrium.
An ASD can be small or large. Small ASDs allow only a little blood to leak from one atrium to the other. Very small ASDs don’t affect the way the heart works and don’t require any treatment. Many small ASDs close on their own as the heart grows during childhood.
Medium to large ASDs allow more blood to leak from one atrium to the other, and they’re less likely to close on their own.
Half of all ASDs close on their own or are so small that no treatment is needed. Medium to large ASDs that need treatment can be repaired using a catheter procedure or open-heart surgery.
Ventricular septal defect . A VSD is a hole in the part of the septum that separates the ventricles-the lower chambers of the heart. The hole allows oxygen-rich blood to flow from the left ventricle into the right ventricle instead of flowing into the aorta and out to the body as it should.
What To Expect After Cardiac Surgery
After cardiac surgery, children are usually transferred to the Paediatric Intensive Care Unit for close monitoring by specialist nurses and doctors. Immediate family members are encouraged to visit children in PICU, however, please note that visitor numbers are limited. Overnight accommodation is very limited for parents of children in PICU so you will need to be prepared to return home .
During this phase, your child will have several tubes and wires attached to them which can be confronting at first but it is important to remember that this is part of the normal recovery process for children who have had heart surgery. As they recover, these will be removed. Once stable, your child will be transferred to the cardiac inpatient ward. The staff in the PICU will support you through your childs stay. PICU also has a Social Work Team who are available to provide support to you and your family.
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Normal Heart And Heart With Tetralogy Of Fallot
Figure A shows the structure and blood flow in the interior of a normal heart. Figure B shows a heart with the four defects of tetralogy of Fallot.
Babies and children who have tetralogy of Fallot have episodes of cyanosis, which can sometimes be severe. In the past, when this condition wasn’t treated in infancy, older children would get very tired during exercise and could have fainting spells. Tetralogy of Fallot is now repaired in infancy to prevent these types of symptoms.
Tetralogy of Fallot must be repaired with open-heart surgery, either soon after birth or later in infancy. The timing of the surgery will depend on how much the pulmonary artery is narrowed.
Children who have had this heart defect repaired need lifelong medical care from a specialist to make sure they stay as healthy as possible.
Types Of Congenital Heart Defects
Congenital heart defects change the normal flow of blood through the heart. This is because some part of the heart didn’t develop properly before birth.
There are many types of congenital heart defects. Some are simple, such as a hole in the septum that allows blood from the left and right sides of the heart to mix, or a narrowed valve that blocks blood flow to the lungs or other parts of the body.
Other defects are more complex. These include combinations of simple defects, problems with where the blood vessels leading to and from the heart are located, and more serious problems with how the heart develops.
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A Parents Emotional Agony When An Infant Undergoes Heart Surgery
One family describes their ordeal, while medical professionals say infant heart procedures are becoming safer despite nine deaths at a Florida hospital.
Open-heart cardiac surgeries on infants are getting safer,
A leading cardiothoracic surgeon gave Healthline that assessment, despite one Florida hospitals high mortality rate from such operations, which CNN revealed in June.
While that news was frightening, Dr. James Tweddell, a member of the medical advisory board for the Pediatric Congenital Heart Association , said every aspect of infant cardiac surgeries is getting better and safer.
A year-long CNN investigation found that from 2011 to 2013, St. Marys Medical Center in West Palm Beach, Florida, had a 12 percent mortality rate for infant heart surgeries, more than three times the national average.
According to the report, since the hospitals program began in 2011, nine infants died there after undergoing heart surgery.
That CNN revelation led the medical center to suspend open-heart infant cardiac surgery.
After the story was broadcast, the hospital also announced it would conduct a comprehensive review of its pediatric cardiology program that will involve outside experts.
A CNN update on August 18 reported that St. Marys has closed its child heart-surgery program.
A Long Difficult Journey
The journey has been agonizing for the family.
At Johns birth, their first problem was to find a surgical team and a hospital they could trust.
After a frustrating meeting with one cardiologist who walked away, Gina said she turned to the Internet and basic word-of-mouth for help.
I found hundreds of heart stories with almost every writer trying to advertise whichever hospital, surgeon or cardiologist they became emotionally attached to, Gina recalled. I was confused. Persuasive advertisements and marketing techniques were everywhere. But I had no hard facts.
I felt stuck in a huge, money-sucking industry that was impossible to navigate, filled with vagueness and manipulation, she added. Its not like you can Google, Which hospital within a 500-mile radius of where I live is the most honest, trustworthy, and does the right thing?
Today, parents faced with infant heart surgery can find information and resources on the PCHA website, www.conqueringchd.org.
The organizations goal is to empower patients and families by providing educational resources necessary to achieve the highest quality care available.
Amy Basken, a PCHA spokesperson, told Healthline that congenital heart disease is the most common birth defect, affecting one in 100 births.
Approximately one third of babies born with congenital heart disease will require at least one lifesaving intervention in the first few days or weeks of life, she said. The good news is that most babies will survive.
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