Posts Tagged ‘CCHD’

What is tetralogy of Fallot?

Friday, May 5th, 2017

You have probably heard about Jimmy Kimmel’s baby, Billy, being born with a critical congenital heart defect called tetralogy of Fallot (TOF). Fortunately, Billy received lifesaving heart surgery and is home from the hospital, reportedly doing well.

Congenital heart defects are the most common types of birth defects. Nearly 1 in 100 babies (about 1 percent or 40,000 babies) is born with a heart defect in the United States each year. And critical congenital heart disease (CCHD) is a group of the seven most severe congenital heart defects. About 4,800 babies each year are born with a CCHD. Babies with CCHD need treatment within the first few hours, days or months of life. Without treatment, CCHD can be deadly.

TOF is a rare congenital heart defect that affects about 1,660 babies each year in the United States. Babies born with this condition actually have four different problems with their heart. According to the CDC, they are:

  1. A hole in the wall between the two lower chambers―or ventricles―of the heart. This condition also is called a ventricular septal defect.
  2. A narrowing of the pulmonary valve and main pulmonary artery. This condition also is called pulmonary stenosis.
  3. The aortic valves, which opens to the aorta, is enlarged and seems to open from both ventricles, rather than from the left ventricle only, as in a normal heart. In this defect, the aortic valve sits directly on top of the ventricular septal defect.
  4. The muscular wall of the lower right chamber of the heart (right ventricle) is thicker than normal. This also is called ventricular hypertrophy.

Signs and Symptoms

After birth, signs and symptoms of heart defects can include:

  • Fast breathing
  • Gray or blue skin coloring (also called cyanosis)
  • Fatigue (feeling tired all of the time)
  • Slow weight gain
  • Swollen belly, legs or puffiness around the eyes
  • Trouble breathing while feeding
  • Sweating, especially while feeding
  • Abnormal heart murmur (unusual sounds heard during a heartbeat)

Diagnosis

TOF can be diagnosed during pregnancy or after birth. During a prenatal ultrasound a doctor may be able to determine that there is a problem with the baby’s heart. A fetal echocardiogram (an ultrasound of just the heart) would then be ordered for further testing. An echocardiogram is an ultrasound of the baby’s heart that can show problems with the structure of the heart and how the heart is working.

However, TOF is usually diagnosed after the baby is born. In most cases, health care providers detect a heart murmur (often a “whooshing” sound heard between heartbeats) or cyanosis (baby’s skin turns blue).

To confirm the presence of a CCHD, a health care provider will order an echocardiogram.

TOF and CCHD can also be detected with newborn screening. Newborn screening checks for serious but rare conditions at birth. It includes blood, hearing and heart screening. All states require newborn screening, but they don’t all require screening for CCHD. Babies are screened for CCHD with a test called pulse oximetry (also called pulse ox). This test checks the amount of oxygen in your baby’s blood using a sensor attached to his finger or foot.

Treatment

Babies born with TOF need to have surgery soon after they are born to widen the pulmonary valve. This allows the blood to reach the lungs and become oxygenated. They will also correct the hole between the lower chambers of the heart. And additional surgeries to replace valves may also be required.

Most babies born with TOF go on to be active and healthy, but they will need to be followed by a cardiologist throughout their lives. We’re glad Jimmy Kimmel’s baby received prompt care and continues to do well.

Research

Heart defects develop in the early weeks of pregnancy when the heart is forming, often before you know you’re pregnant and most of the time, there is no known cause of a congenital heart defect. That is why many March of Dimes grantees are pursuing a variety of approaches aimed at preventing heart defects and improving their treatment.

CHDs and our babies

Monday, February 8th, 2016

BabyOnChest-When the month of February arrives, many people think of Valentine’s Day hearts and red flowers. February is also a time to raise awareness about another heart topic – congenital heart defects (CHDs).

Heart defects develop in the early weeks of pregnancy when the heart is forming, often before a woman knows she’s pregnant. Congenital heart defects are heart conditions that are present at birth. We’re not sure what causes most CHDs, but these defects can affect the structure of a baby’s heart and the way it works.

CHDs are the most common types of birth defects. Nearly 1 in 100 babies (about 1 percent or 40,000 babies) is born with a heart defect in the United States each year. They may be diagnosed before your baby is born, or soon after birth. Some CHDs are diagnosed much later in life.

There are different kinds of CHDs and their symptoms can be mild to severe. Treatment for each type of CHD depends on the heart defect. The seven most severe forms of CHD are called Critical Congenital Heart Disease (CCHD). Babies with CCHD need treatment within the first few hours, days or months of life.

Although the causes of most CHDs are not yet fully understood, certain medical conditions may play a role, such as diabetes, lupus, rubella, phenyletonuria (PKU) if not following the special diet, and being very overweight during pregnancy.

To become familiar with the different kinds of CHDs, possible causes, screenings and treatments, see our article.

As you send out a Valentine card or share in the spirit of love this week, consider learning and raising awareness about congenital heart defects. This condition affects the hearts of our smallest Valentines.

For information on where to find support and resources for your baby, please email or text us at AskUs@Marchofdimes.org

 

Parenting your child with a heart defect

Wednesday, February 11th, 2015

in the NICUWhen your baby has a heart defect, it is overwhelming, exhausting, emotionally draining, and beyond scary. Have I left any adjectives out?

Congenital (present at birth) heart defects (CHDs) affect 1 in 100 babies every year. These heart defects can affect the heart’s structure, how it works, or both. Did you know that congenital heart defects are the most common types of birth defects? Each year, about 40,000 babies are born with a heart defect in the U.S. The good news is that more and more children born with CHDs are living longer, healthier lives, due to medical advances.

Heart defects develop in the early weeks of pregnancy when the heart is forming. Severe congenital heart defects are usually diagnosed during pregnancy or soon after birth. Less severe heart defects often aren’t diagnosed until children are older. Depending on the heart defect, your child may or may not need active treatment. For example, some defects resolve on their own. However, there are heart defects that require more intensive treatment and care.

What is CCHD?

Critical congenital heart disease (CCHD) is a group of the seven most severe congenital heart defects:  Hypoplastic left heart syndrome (HLHS); Pulmonary atresia (PA); Tetralogy of Fallot (TOF); Total anomalous pulmonary venous return (TAPV, or TAPVR); Transposition of the great arteries (TGA); Tricuspid atresia (TA); Truncus arteriosus.

About 1 in 4 babies born with a heart defect has CCHD, or about 4,800 babies in the U.S. every year. Babies with CCHD need treatment soon after birth – often within hours, days or months, depending on the severity of the condition. A baby with CCHD will need ongoing treatment from a pediatric cardiologist, a medical doctor with advanced training.

Your child with CCHD

Some babies with CCHD will receive surgery soon after birth, and others require subsequent surgeries as they get older. The treatment your child receives will depend on the type and severity of the defect. If your child has been diagnosed with CCHD, it is important to understand his disease and the treatment that is required. Ask your child’s pediatric cardiologist and pediatrician all of your questions. The doctor can tell you if your child’s activity should be encouraged or restricted, if your child needs antibiotic treatment before certain procedures, if your child requires extra calories (from food) to help maintain his health, if he needs physical therapy or other kinds of therapies.

Children with heart defects may be delayed in reaching their developmental milestones. Early intervention may help enable your child to make strides and catch up. Other children may develop a disability over time. The early intervention program is designed to be family centered – moms and dads receive help in parenting their child, and the child receives therapy to keep progressing. Early intervention, together with medical advances, are helping children with CCHD live richer, fuller lives.

You may need support

Parenting a child with a congenital heart defect involves a blend of vigilance, medical interventions, health advocacy and lots of love and patience. The March of Dimes’ online community, Share Your Story, is a place where parents of babies with heart defects as well as other birth defects or disabilities, can go to find support, comfort and information. There is nothing like the camaraderie of another parent who has walked in your shoes to help you through your journey.  Just log on and post a comment and you will be welcomed and supported.

Where can you learn more?

Visit our website to learn more about CCHD. We discuss the most common heart defects, how they are diagnosed and treated, as well as possible causes. You will also learn about screening tests your baby can have to determine if he has CCHD. Additional guidance on parenting a child with a heart defect is available on the CDC website.

For more information about any of the heart defects listed above, contact us at AskUs@marchofdimes.org and we will be happy to help. To see similar posts in the Delays and Disabilities series, click here.

 

 

 

 

Today is World Heart Day

Monday, September 29th, 2014

World Heart DayThis year the World Heart Federation is focusing on creating heart-healthy environments for you and your family. World Heart Day raises awareness of maintaining a healthy diet, limiting alcohol and tobacco use, and increasing physical activity.

World Heart Day is a good time to think about one of the most common birth defects – congenital heart defects. It affects 1 in 100 babies every year. These heart defects can affect the heart’s structure, how it works, or both.

Heart defects develop in the early weeks of pregnancy when the heart is forming. Severe congenital heart defects are usually diagnosed during pregnancy or soon after birth. Less severe heart defects often aren’t diagnosed until children are older.

What can you do?

We’re not sure what causes most heart defects, but things that may play a role include diabetes and obesity (being very overweight).

If you are trying to become pregnant or you are currently pregnant:

• Do not smoke

• Do not drink alcohol

• Talk to your provider about any medicine you take, including prescription and over-the-counter medicine, herbal products and supplements

• Maintain a healthy diet and exercise 30 minutes a day if you can

• Go to all your prenatal visits

After birth your baby may be tested for critical congenital heart defects (CCHD) as part of newborn screening before he leaves the hospital. All states require newborn screening, but not all require screening for CCHD. You can ask your provider if your state tests for CCHD or click here to see what your state covers.

After birth, signs and symptoms of heart defects can include:

• Fast breathing

• Gray or blue skin coloring

• Fatigue (feeling tired all of the time)

• Slow weight gain

• Swollen belly, legs or puffiness around the eyes

• Trouble breathing while feeding

• Sweating, especially while feeding

• Abnormal heart murmur (extra or abnormal sounds heard during a heartbeat)

If you see any of these signs, call your baby’s health care provider right away. For more information about congenital heart defects visit our website.

If you have questions, email us at AskUs@marchofdimes.org.

Click here to read more News Moms Need blog posts on: pregnancy, pre-pregnancy, infant and child care, help for your child with delays or disabilities, and other hot topics.

September is Newborn Screening Awareness Month

Friday, September 5th, 2014

newborn-screening-picture1September is Newborn Screening Awareness Month. All babies in the United States get newborn screening. These tests look for rare but serious and mostly treatable health disorders. Babies with these disorders often look healthy. But unless the condition is diagnosed and treated early, a baby can develop lasting physical problems or intellectual disabilities, or may even die.

How is newborn screening done?

Newborn screening is done in 3 ways:
1. Most newborn screening is done with a blood test. Your baby’s provider pricks your baby’s heel to get a few drops of blood. The blood is collected on a special paper and sent to a lab for testing. The lab then sends the results back to your baby’s health provider.
2. For the hearing screening, your provider places a tiny, soft speaker in your baby’s ear to check how your baby responds to sound.
3. For heart screening, a test called pulse oximetry is used. This test checks the amount of oxygen in your baby’s blood by using a sensor attached to his finger or foot. This test is used to screen babies for a heart condition called critical congenital heart disease (CCHD).

When is newborn screening done?
Your baby gets newborn screening before he leaves the hospital, when he’s 1 or 2 days old. Some states require that babies have newborn screening again about 2 weeks later.

If your baby is not born in a hospital, talk to your baby’s provider about getting newborn screening before he is 7 days old.

How many health conditions should your baby be screened for?
Each state decides which tests are required. The March of Dimes would like to see all babies in all states screened for at least 31 health conditions. Many of these health conditions can be treated if found early.

Today all states require newborn screening for at least 26 health conditions. The District of Columbia and 42 states screen for 29 of the 31 recommended conditions. Some states require screening for up to 50 or more. You can find out which conditions your state screen for here.

Critical congenital heart disease, CCHD

Thursday, February 13th, 2014

Critical congenital heart disease (also called CCHD) is a group of the seven most severe heart defects present at birth. They may affect the shape of a baby’s heart, the way it works, or both. Babies with CCHD need treatment within the first few hours, days or months of life. Without treatment, CCHD can be deadly.

About 4,800 babies in the U.S. each year are born with CCHD. These seven heart defects are part of CCHD: Hypoplastic left heart syndrome (HLHS); Pulmonary atresia (PA); Tetralogy of Fallot (TOF); Total anomalous pulmonary venous return (TAPV, or TAPVR); Transposition of the great arteries (TGA); Tricuspid atresia (TA); Truncus arteriosus.

February 7-14 is Congenital Heart Defects (CHD) Awareness Week. The March of Dimes is working to help identify and understand these defects through research. We also are advocating Congress to reauthorize the Newborn Screening Saves Lives Act. To learn more about these CCHDs, several other types of congenital heart defects, possible causes and risk factors, and treatment options, read our article at this link.

Newborn screening and the March of Dimes

Tuesday, October 15th, 2013

newborn-screening-picture1This year, the March of Dimes and other health organizations are commemorating the 50th anniversary of newborn screening. In 1959, the March of Dimes began to explore newborn screening (NBS) as a means to detect and prevent the catastrophic consequences of metabolic conditions such as PKU (phenylketonuria) on a large scale. Subsequently, we funded research into several genetic and metabolic diseases that can be tested at birth, expanding the concept of newborn screening as an essential component of maternal/child health care delivery. We have worked tirelessly to promote expanded newborn screening programs in every state and to obtain federal guidelines for newborn screening, which has improved and saved the lives of countless thousands of affected children.

Linus Pauling (1901-1994), winner of the Nobel Prize in Chemistry in 1954, received one of the earliest basic research grants awarded by the March of Dimes. Dr. Pauling proposed the concept of molecular disease, using sickle cell anemia as a model. His finding that sickle hemoglobin differs in a measurable way from normal hemoglobin introduced the idea that heritable changes in the structure of a molecule could lead to improper function and result in disease. Dr. Pauling’s work laid the groundwork for the techniques used in newborn screening and diagnosis of sickle cell anemia.

Robert Guthrie, MD (1916-1995) was a March of Dimes grantee who developed a simple blood test to detect PKU, a cause of brain damage and intellectual disability. Dr. Guthrie refined an earlier PKU test, making it possible to analyze a dried spot of blood on filter paper instead of a liquid blood sample, an easier and inexpensive method that could be used on a mass scale. His breakthrough ushered in an era of state-mandated newborn screening programs. In 1963, Massachusetts became the first state to pass a law making the Guthrie PKU test mandatory, and New York followed soon after. The year 1963 marks the birth of state-mandated newborn screening, whose 50th anniversary we recognize this year.

The March of Dimes went on to award grants to develop inexpensive screening tests for congenital hypothyroidism, congenital adrenal hyperplasia, and biotinidase deficiency. In 1992, we called for every state to establish built-in safeguards for their newborn screening programs so that babies born with potentially catastrophic but treatable metabolic disorders would get help in a timely fashion. In 2000, we proposed a national standard for NBS and applauded an American Academy of Pediatrics review for improvements to the nation’s newborn screening programs, insisting that the primary consideration should be the health of the infant.

In 2008, Congress passed the Newborn Screening Saves Lives Act which established national guidelines on what conditions should be tested in newborn screening programs. The March of Dimes actively advocated in favor of its passage. At present, we promote 31 core conditions for newborn screening based on the U.S. Department of Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.