Posts Tagged ‘heart defects’

Birth defects research changes lives

Thursday, March 3rd, 2016

March of Dimes invests in birth defects research

Sick babyFor many years, March of Dimes grantees have been seeking to identify genes and environmental factors that cause or contribute to birth defects. For example, in 2015, there were 78 million dollars in active birth defects research grants.

Today is World Birth Defects Day

Understanding the causes of birth defects is a crucial first step towards developing effective ways to prevent or treat them. Some birth defects are caused by a mutation (change) in a single gene. In 1991, Stephen Warren, PhD, a March of Dimes grantee at Emory University in Atlanta, Georgia, identified the gene that causes fragile X syndrome, the most common inherited cause of intellectual disabilities.

Current grantees are seeking to identify genes that may play a role in other common birth defects, such as congenital diaphragmatic hernia (CDH). Others are working on identifying environmental exposures that can cause birth defects. In fact, did you know that in 1973, March of Dimes grantees were the first to link drinking alcohol during pregnancy to a specific pattern of birth defects and intellectual disabilities now known as fetal alcohol spectrum disorders? By understanding the connection between alcohol and birth defects, pregnant moms are now able to have healthier pregnancies.

Many other birth defects appear to be caused by multiple genes and environmental factors, adding to the complexity of understanding their causes. March of Dimes grantees have discovered genes that contribute to heart defects and to cleft lip/palate, both of which are among the most common birth defects.

Please help us raise awareness of this serious global problem and advocate for more, surveillance, prevention, care and research to help babies and children. 

Join us on Twitter #WorldBDDay.

Share your stories and lend your support.

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

 

Wrapping up birth defects prevention month

Wednesday, January 27th, 2016

Baby girl smilingWe’ve had a busy month spreading the word about birth defects. If you’ve missed some posts, here is a wrap up of messages. More posts will be coming each week, so stay tuned.

Birth defects are common.

  • Did you know that every 4.5 minutes, a baby is born with a birth defect in the U.S.? That’s 1 in 33 babies or more than 120,000 babies each year.
  • Birth defects are health conditions that are present at birth. They may affect how the body looks, works, or both.
  • Common birth defects include heart defects, cleft lip and cleft palate, Down syndrome and spina bifida. Some birth defects are on the rise for unknown reasons – like gastroschisis.
  • Birth defects are the leading cause of infant deaths in the first year of life in the U.S.
  • Birth defects are critical. They are the leading cause of death and disability in children across the world.

There are thousands of different birth defects, and about 70 % of the causes are unknown.

  • Birth defects are thought to be caused by a complex mix of factors including our genes, behaviors and environment.
  • Birth defects are costly. The CDC says, each year, total hospital costs for U.S. children and adults with birth defects exceed $2.6 billion.
  • Many birth defects are discovered after the baby leaves the hospital or within the first year of life.
  • Babies who survive and live with birth defects are at an increased risk for long-term disabilities and lifelong challenges.

Not all birth defects can be prevented, but some can.

  • Women can take steps toward a healthy pregnancy. Taking 400 micrograms of folic acid during childbearing years can help to reduce the risk for birth defects of the brain and spine called neural tube defects (NTDs).
  • Pregnant or trying to conceive? Here are steps you can take to help prevent birth defects and have a healthy pregnancy.
  • Avoid alcohol, cigarettes and “street” drugs during pregnancy. Talk to your provider before you start or stop taking any type of medications.
  • Prevent infections during pregnancy – wash your hands often and well.
  • Make sure your vaccinations are up to to date.
  • Get chronic medical conditions under control before pregnancy. Diabetes and obesity may increase the risk for birth defects.
  • Collect your family health history and share it with your healthcare provider.

Share and connect

Birth defects can happen to any family. Share and connect with others on our online community Share Your Story.

Have questions? Email our Health Education Specialists 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.

 

 

 

 

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.

Smoking causes birth defects

Tuesday, January 21st, 2014

stop-smokingTo dispel any uncertainty about the serious harm caused to babies and pregnant women by smoking, the first-ever comprehensive systematic review of all studies over the past 50 years has established clearly that maternal smoking causes a range of serious birth defects including heart defects, missing/deformed limbs, clubfoot, gastrointestinal disorders, and facial disorders (for example, of the eyes and cleft lip/palate).

Smoking during pregnancy is also a risk factor for premature birth, says Dr. Michael Katz, senior Vice President for Research and Global Programs of the March of Dimes. He says the March of Dimes urges all women planning a pregnancy or who are pregnant to quit smoking now to reduce their chance of having a baby born prematurely or with a serious birth defect. Babies who survive being born prematurely and at low birthweight are at risk of other serious health problems, Dr. Katz notes, including lifelong disabilities such as cerebral palsy, intellectual disabilities and learning problems. Smoking also can make it harder to get pregnant, and increases the risk of stillbirth.

About 20 percent of women in the United States reported smoking in 2009. Around the world, about 250 million women use tobacco every day and this number is increasing rapidly, according to data presented at the 2009 14th World Conference on Tobacco or Health in Mumbai.

The new study, “Maternal smoking in pregnancy and birth defects: a systematic review based on 173,687 malformed cases and 11.7 million controls,” by a team led by Allan Hackshaw, Cancer Research UK & UCL Cancer Trials Centre, University College London, was published online January 17th in Human Reproduction Update from the European Society of Human Reproduction and Embryology.

When women smoke during pregnancy, the unborn baby is exposed to dangerous chemicals like nicotine, carbon monoxide and tar, Dr. Katz says. These chemicals can deprive the baby of oxygen needed for healthy growth and development.

During pregnancy, smoking can cause problems for a woman’s own health, including:

• Ectopic pregnancy

• Vaginal bleeding

• Placental abruption, in which the placenta peels away, partially or almost completely, from the uterine wall before delivery

• Placenta previa, a low-lying placenta that covers part or all of the opening of the uterus

Smoking is also known to cause cancer, heart disease, stroke, gum disease and eye diseases that can lead to blindness. If you are pregnant or thinking about becoming pregnant, there has never been a better time to quit.

You can read the Surgeon General’s report: The Health Consequences of Smoking – 50 Years of Progress at this link.

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.

Not all NICU babies are preemies

Thursday, September 9th, 2010

isoletteThe wonderful DiscoveryHealth NICU series (Thursdays at 10 PM ET/PT) has brought to light the intensity and reality of the struggles premature babies and their families face.  But babies born full term can be in the NICU, too, especially if they are sick or have a birth defect and need specialized treatment.

Some babies are born with an abdominal wall defect such as gastroschisis or omphalocele. These often require surgery or staged repair over time.  Some babies have heart defects that also require monitoring or surgery.  Other babies may qualify as full term (over 37 completed weeks) but have failed to thrive and have a low birthweight.   Other conditions that might require a stay in the NICU  include: anemia (low number of red blood cells in the blood), apnea (breathing irregularity), bradycardia (abnormal slowing of the heart rate), bronchopulmonary dysplasia (a form of chronic lung disease), hydrocephalus (water on the brain), sepsis (infection that spreads throughout the body).

All of us with preemies are acutely aware of these intensive care services, but we need to realize that the wonderful staff of the NICU need to be prepared for any baby, any size, any gestational age, any complication.  Thank goodness they are there for all of us.

Some fertility treatments may increase the risk of birth defects

Wednesday, November 19th, 2008

Infants who are conceived using assisted reproductive technogy (ART) may be at increased risk of certain birth defects, according to a new study by the Centers for Disease Control and Prevention (CDC).

With ART, a woman’s eggs are surgically removed, combined with sperm in a lab, and then returned to her body. In vitro fertilization (IVF) is the most common ART procedure.

In the study, ART was associated with:

* Twice the risk of some heart defects

* More than twice the risk of cleft lip or palate (a gap in the lip or roof of the mouth)

* Over four times the risk of gastrointestinal defects

The study was limited. It looked only at ART and not at other kinds of fertility treatment, like fertility drugs or artificial insemination. Also, it reviewed only pregnancies that resulted in a single birth (not twins, triplets or more).

To learn more about fertility treatment, see the March of Dimes article. For more information on the study, visit the CDC Web site.