How Is A Child Cared For At Home After Hypoplastic Left Heart Syndrome Surgical Repair
Pain medications, such as acetaminophen or ibuprofen, may be recommended to keep the child comfortable at home. The childs doctor will discuss pain control before the child is discharged from the hospital.
If any special treatments are to be given at home, the nursing staff will ensure that family members are able to provide them, or a home health agency may assist.
Families may receive additional instructions from the childs health care team.
Among The Nation’s Best
U.S. News & World Report has once again ranked the Herma Heart Institute at Children’s Wisconsin among the top programs in the nation for pediatric cardiology and heart surgery. This ranking reflects the excellent outcomes and care we provide for even the most complex heart conditions. Families travel from across the country, and even around the world, to receive care from our specialists who are experienced in treating congenital heart disease from before birth and into adulthood.
What Is The Outlook For Babies With Hypoplastic Left Heart Syndrome
The outlook for hypoplastic left heart syndrome depends on how complex the heart damage is. Ask your babys healthcare provider about the risks associated with each surgery.
Some children may have decreased physical endurance for the rest of their lives. Usually, healthcare providers recommend limiting physical activities such as competitive sports.
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Recovery: Comprehensive Stage Ii
The length of hospital stay will vary. The average recovery time is 1-3 weeks. After surgery, the baby will go to the Cardiac Intensive Care Unit and will have a chest tube and intravenous lines . The IV’s will be used for monitoring and giving medicines. As long as the baby is on the breathing machine or needs to be watched closely, the baby will stay in the CICU. As the baby recovers he/she will be moved to the cardiac floor for the rest of the hospital stay. The average length of hospital stay is usually around 1 to 2 weeks.
What Happens After The Norwood Procedure
Babies who have the Norwood procedure usually spend 3 to 4 weeks in the hospital to recover. They get-around-the-clock care and monitoring. They also get medicines to help the heart and improve blood flow. They will keep taking some of these medicines at home.
During this time, the care team teaches parents how to care for their baby at home. Babies usually can go home when they are feeding well, growing well, and gaining weight.
Children with hypoplastic left heart syndrome will need at least two more surgeries, the Glenn procedure and the Fontan procedure .
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How Is It Diagnosed
A clear diagnosis is the first step to treatment. Doctors can use ultrasound to diagnose HLHS before birth. If there is a concern for heart disease either by prenatal ultrasound or because of presenting symptoms, doctors may order an echocardiogram, which uses sound waves to make a moving image of the heart on a video screen.
Itâs important to diagnosis HLHS before or shortly following birth so that a treatment plan can be developed as soon as possible. The postnatal management requires a life saving medication that is started immediately after birth to support blood flow to the vital organs. If HLHS is diagnosed before birth, doctors will recommend that the mother gives birth at a hospital with cardiac surgery capabilities. There is a rare subset of babies with HLHS who are profoundly sick at birth and require immediate resuscitation. For this reason, it is very important that any suspicion prenatally for a cardiac abnormality be followed-up with a fetal echocardiogram.
A pediatric cardiologist can use several tests to confirm your childs diagnosis. These tests may include:
- Chest X-ray: A beam of electromagnetic energy creates images on film that show the inside structures of your babys body.
- Cardiac magnetic resonance imaging :This test produces a three-dimensional image of the heart so youre your childs doctors can examine blood flow and functioning of the heart as it is working.
Caring For Your Child At Home Following A Hlhs Surgery
Pain medications, such as acetaminophen or ibuprofen, may be recommended to keep your child comfortable at home. Your child’s physician will discuss pain control before your child is discharged from the hospital.
If any special treatments are to be given at home, the nursing staff will ensure that you are able to provide them, or a home health agency may assist you.
You may receive additional instructions from your child’s physicians and the hospital staff. Families will also be referred to our Neurodevelopmental Follow-up Program, where our specialists will monitor and encourage your child’s healthy development for living life to the fullest.
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Hypoplastic Left Heart Syndrome Surgery
Typically, your child will require open heart surgery to re-direct the oxygen-rich blood and oxygen-poor blood. After these operations:
- The right side of the heart will do what is usually the job of the left side â pumping oxygenated blood to the body.
- The deoxygenated blood will flow from the veins to the lungs without passing through the heart.
The series of three reconstructive operations to repair HLHS â the Norwood, Glenn and Fontan procedures â is known as ” Staged Reconstruction .”
Frequent surveillance in infancy and early childhood is important to minimize risk factors for the eventual Fontan operation. Your child will also need a customized series of diagnostic tests between the planned stages of surgery, and throughout childhood. Additional surgical or catheter therapies, or in rare cases heart transplantation, may also be recommended.
How Is Hypoplastic Left Heart Syndrome Diagnosed In A Child
In many cases, hypoplastic left heart syndrome can be diagnosed with an ultrasound while the fetus is still in the womb . After birth, you or your healthcare provider may notice that your baby seems limp or listless, has trouble breathing, or has a blue color to his or her skin, lips, or nails. Your child will need to see a pediatric cardiologist for a diagnosis. This is a doctor with special training to treat heart problems in children.
The cardiologist will examine your baby, listen to his or her heart and lungs, and make other observations. Testing for congenital heart disease varies. Your child may have these tests:
- Chest X-ray. A chest X-ray may show problems that show up with hypoplastic left heart syndrome.
- Electrocardiogram . An ECG records the electrical activity of the heart. It shows abnormal rhythms , and finds heart muscle damage.
- Echocardiogram . An echo uses sound waves to make moving pictures of the heart and heart valves. Children with HLHS are almost always diagnosed by echocardiography.
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Fetal Treatment For Hlhs
Fetal treatment is available for select fetuses with HLHS and a restrictive atrial septal defect. Potential candidates for fetal cardiac intervention will receive a comprehensive evaluation at the Micigan Medicine’s fetal heart center. The fetal cardiac procedure may require a maternal skin incision to gain access to the atrium or, depending on fetal position, may be performed percutaneously. In a percutaneous procedure, a balloon catheter is inserted to open the atrial septal defect. This may prevent irreversible damage to the pulmonary vasculature, and also prevent the need for emergent, high-risk intervention at birth. This intervention may lead to improved heart development.
What Happens In Hypoplastic Left Heart Syndrome
In hypoplastic left heart syndrome, the left ventricle is too small. The aorta, which takes the blood to the body, is small too. The heart cant pump enough blood to the body.
The right ventricle, which is only supposed to pump blood to the lungs, pumps blood to the lungs and the body through a connection called a patent ductus arteriosis . Usually, babies dont need this connection after theyre born so it closes. But a baby with hypoplastic left heart syndrome needs this connection to get blood to the body. Because the right ventricle is pumping blood to the lungs and the body, it is doing extra work.
Babies with HLHS are almost always born with an atrial septal defect . This is a hole between the atria that lets blood with oxygen mix with blood low on oxygen. This way, the blood that the right ventricle pumps out to the body has some oxygen in it.
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Hlhs Postoperative Care For Your Child
After each surgery, infants will return to the cardiac intensive care unit to be closely monitored during recovery.
Your child may need other equipment not mentioned here to provide support while in the CICU, or afterwards. The hospital staff will explain all of the necessary equipment to you.
Your child will be kept as comfortable as possible with several different medications some which relieve pain, and some which relieve anxiety. The staff will also be asking for your input as to how best to soothe and comfort your child.
After being discharged from the CICU, your child will recuperate in another hospital unit before going home. You will learn how to care for your child at home before your child is discharged. Your child may need to take medications for a while, and these will be explained to you. The staff will give you instructions regarding medications, activity limitations, and follow-up appointments before your child is discharged.
Infants who spent a lot of time on a ventilator, or who were fairly ill while in the CICU, may have trouble feeding initially. These babies may have an oral aversion they might equate something placed in the mouth, such as a pacifier or bottle, with a less pleasant sensation such as being on the ventilator. Some infants just are tired, and need to build their strength up before they will be able to learn to bottle-feed. Strategies used to help infants with nutrition include the following:
The Fontan Palliation Sequence
STAGE ONE | Norwood Procedure: The Norwood procedure is the first stage in a series of three open heart procedures to palliate HLHS. Typically, a Norwood procedure is done within the first two weeks of life and represents a high-risk, extensive operation. The principle behind the Norwood procedure is that the only good pumping chamber must pump blood to the body. There is no natural, permanent connection between the right ventricle and the body. Thus, the Norwood procedure involves dividing the blood vessel that takes blood from the right ventricle to the lungs and rerouting it to take blood to the body.
Modified Blalock-Taussig shunt a small tube from the main blood vessel to the body that connects to the blood vessel to the lungs
Sano shunt – tube goes from the pumping chamber to the blood vessel to the lungs
Both methods are accepted. The decision to use one versus the other is individualized based on the infants anatomy and the surgeons preference.
STAGES TWO & THREE: the blood which returns from the body is directly routed to the lungs without passing through the heart.
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How Does A Normal Heart Function
It is important to look at a normal heart and how it usually functions. Oxygen-poor blood returns to the right atrium from the body and travels to the right ventricle. It is then pumped through the pulmonary artery into the lungs where it receives oxygen. Oxygen-rich blood returns to the left atrium from the lungs and passes into the left ventricle. The blood is then pumped out to the body through the aorta.
Knox’s Story: Hybrid Stage 2
Born with half a heart, Knox has been a patient at Nationwide Childrens Hospital since the day he was born. In order to survive, Knox must undergo a series of three heart procedures before age two. The first took place when he was just six days old. Now at six months old, the second more complicated procedure involves cardiac reconstruction through open heart surgery.
Treatment For Hypoplastic Left Heart Syndrome
Hypoplastic left heart syndrome is most often fatal without early intervention. Compared to 25 years ago, there are now many different options for treatment of this complex heart condition an individualized approach is taken for each and every child. Your doctor will explain each individual option, and why one particular approach might be recommended for your child.
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Hypoplastic Left Heart Syndrome
Hypoplastic left heart syndrome is a serious problem that involves several parts of the left side of the heart. It is quite rare and occurs in about one out of every 5,000 babies born. In the United States, about 1,000 babies with HLHS are born each year. Two thirds of the babies affected are boys. Most babies with HLHS are otherwise healthy, but some have other medical problems including other heart problems, neurologic problems, and Turner’s syndrome.
The University of Michigan C.S. Mott Childrens Hospital was among the first congenital heart programs to achieve consistent success in the surgical treatment of HLHS. While historically every baby born with HLHS died in infancy, today thanks in large part to the heart specialists at University of Michigan outcomes for children with HLHS have dramatically improved. More than 90 percent of HLHS babies treated at the University of Michigan survive to discharge, making the U-M Congenital Heart Center a worldwide leader in the treatment of HLHS. Learn more about the Congenital Heart Center.
What is hypoplastic left heart syndrome?
How is hypoplastic left heart syndrome diagnosed?
HLHS is often diagnosed before a baby is born, usinga type of specialized ultrasound called a fetal echocardiogram.
How is hypoplastic left heart syndrome treated?
For babies with HLHS, treatment generally consists of a three-staged surgical approach, or heart transplantation.
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Between The Norwood And Glenn Operations
Though early outcomes for patients with single ventricle heart defects after staged reconstruction have improved dramatically, the period between the Norwood procedure and the Glenn operation remains a very vulnerable time for infants. CHOP created the Infant Single Ventricle Monitoring Program to focus on the care and monitoring of infants with single ventricle heart defects, such as HLHS, between the first and second reconstructive surgeries.
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Heart Surgeon Spotlight: Meet Dr Chai
As a parent and our Chief of Cardiothoracic Surgery, Paul Chai, MD, knows that where you take your childs heart matters. Learn about Dr. Chai and what makes our Heart Center unique.
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