Posts Tagged ‘congenital heart defects’

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

 

Children with Congenital Heart Defects and Their Use of Special Educational Services

Wednesday, August 19th, 2015

A guest post by Coleen Boyle, PhD, MSHyg
Centers for Disease Control and Prevention

Teacher and studentsSome new research gives us encouraging information showing that children living with birth defects are getting the services they need. Specifically, several of my colleagues and I found that children with congenital heart defects (CHDs) received special education services more often than children without birth defects.

This is important news, because earlier studies have shown us that children with some types of CHDs have a greater chance of having problems with brain development and function as compared to children without birth defects. Knowing that children with CHDs may benefit from—and are receiving—special education services is reassuring. Special education services are those specifically designed to meet the unique needs of a child with a disability.

So what do these findings mean? They demonstrate the importance of developmental screening—short tests usually conducted by a child’s doctor to determine if their basic learning skills are where they should be—for all children with CHDs to ensure they receive the services they need. The American Academy of Pediatrics recommends all children receive these screenings at 9, 18 and 24 or 30 months of age during well visits with the doctor. Screenings may include observing, talking with, or playing with the child to see how he or she plays, speaks, behaves, and moves.

CHDs are heart problems that occur before birth and are the most common type of birth defect in the United States. About 1% or nearly 40,000 births each year are affected by CHDs. Of these, about 1 in 4 is considered a critical CHD, in which surgery or other procedures are needed within the baby’s first year.

Some of the specific findings from the study show that
• Children with CHDs and no other birth defect were 50% more likely to receive special education services than those children without birth defects.
• This increased use of special education services occurred in children with critical CHDs and in children with noncritical CHD.

For this study, we looked at information about children born with a CHD from 1982 to 2004 in metropolitan Atlanta; we also examined a similar sample of newborns without a birth defect. After linking information about these children to special education services they later received (from 1992 to 2012), we determined that children with CHDs more often received those services than children without birth defects.

The Centers for Disease Control and Prevention (CDC) and our partners not only conduct research such as this to identify the scope of the issue and how it is being addressed, we also
• Fund programs and conduct research to help us determine where and when birth defects occur and whom they affect;
• Track CHDs among teens and adults to learn more about their health issues and needs; and
• Collaborate with partners such as the March of Dimes to provide information to families, experts, and organizations to address CHDs.

We at CDC and in particular the National Center on Birth Defects and Developmental Disabilities (NCBDDD) along with our partners, including March of Dimes, strive to help ensure individuals born with these conditions get the care they need throughout their lives.

To learn more read the Key Findings document and the research article abstract.

dr-coleen-boyleThe March of Dimes wishes to thank Dr. Coleen Boyle for this guest post. Dr. Boyle is the Director of NCBDDD and has authored or co-authored more than 100 peer-reviewed and other scientific publications.

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.

Birth Defects Prevention Month

Tuesday, January 3rd, 2012

January is National Birth Defects Prevention Month! This year the theme is “And the Beat Goes On… Looking to the Future for Healthy Hearts” which focuses on congenital heart defects, the most common type of birth defect.

A congenital heart defect is an abnormality in any part of the heart that is present at birth. Heart defects originate in the early weeks of pregnancy when the heart is forming. About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States. The defect may be so slight that the baby appears healthy for many years after birth, or so severe that his life is in immediate danger.

Heart defects are the leading cause of birth defect-related deaths. However, advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects. In the United States, about 1.4 million children and adults live with congenital heart defects today. Almost all are able to lead active, productive lives.

A number of scientists funded by the March of Dimes are studying genes that may underlie specific heart defects or are seeking to identify new genes that may cause heart defects. The goal of this research is to better understand the causes of congenital heart defects, in order to develop ways to prevent them. Grantees also are looking at how environmental factors (such as a form of vitamin A called retinoic acid) may contribute to congenital heart defects. One grantee is seeking to understand why some babies with serious heart defects develop brain injuries, in order to learn how to prevent and treat them.

To learn more about the more common heart defects and how they affect a child, read our article.