Pregnancy in women with congenital heart disease

09
Feb
Posted by Sara

heart and stethoscopeMost women who have congenital heart disease and decide to get pregnant will have a safe pregnancy with minimal risks. However, there are many factors that may need to be considered. During pregnancy, your heart has much more work to do. It has to beat faster and pump more blood to both the mother and the baby. If you are a woman who has congenital heart disease, then this extra stress on your heart may be a concern. Considering these issues before pregnancy and being prepared for potential complications can help you feel more confident and more in control throughout your pregnancy.

Preconception planning
The most important thing you can do if you are a woman with congenital heart disease is to talk to both your cardiologist and obstetrician before you get pregnant. This will allow you to understand what risks (if any) are involved for your pregnancy. You can also determine if there are any concerns with your heart that need to be fixed prior to pregnancy—for instance, do you need to alter any medications or have any surgical repairs? Doing all of this before pregnancy will allow you to make sure your heart and your overall health is ready for pregnancy.

Some medications carry a risk for birth defects. These include ACE inhibitors and blood thinners. Therefore, if you are taking these medications and want to have a baby, it is important to talk to your doctor about their safety and potential alternatives that may work for you. However, you should never stop taking any medications without your doctor’s approval.

You may also want to meet with a genetic counselor to review the risks of passing congenital heart disease on to your baby. This risk will vary depending on the cause of the heart disease.

Pregnancy
During pregnancy you and your doctors will want to minimize any risks for both you and your baby. You will need to have regular follow-ups with both your obstetrician and cardiologist. It is important that your doctors work together and coordinate your care. Some women will need to be followed by a maternal-fetal medicine specialist (an obstetrician who manages high-risk pregnancies).

Although most women with congenital heart disease have safe pregnancies, symptoms of heart disease can increase, especially during the second and third trimesters when the heart is working much harder. This may mean additional visits to both your cardiologist and obstetrician.

Typically if you have a personal or a family history of congenital heart disease, your obstetrician will offer you a fetal echocardiogram at around 18-20 weeks of pregnancy. This is a specialized ultrasound that allows your doctor to check out the anatomy of your baby’s heart and look for major structural changes. Not all heart defects can be identified through fetal echo though.

Delivery
It may surprise you to learn that most women with congenital heart disease can have a normal vaginal delivery. You and your doctor will want to discuss pain management options and have a plan in place. You may need additional monitoring both during and after delivery. This can include oxygen monitoring as well as EKGs (electrocardiogram—a test that checks for problems with the electrical activity of your heart).

If you have congenital heart disease work with both your obstetrician and cardiologist so that you can have the best outcome possible. As with most chronic medical conditions, planning for your pregnancy will allow you to make informed decisions about what is best for you and your baby.

 

Thinking of getting pregnant? Get your blood pressure checked.

06
Feb
Posted by Sara

blood pressureWhen was the last time you had your blood pressure checked? Nearly one in three adults has high blood pressure or hypertension. And yet, many of us do not even know that we have it. High blood pressure can be especially dangerous for both mom and baby during pregnancy. If you have high blood pressure and are thinking about getting pregnant, it is very important that you talk to your health care provider and get it under control as soon as possible.

Blood pressure is the force of the blood pushing against the walls of the arteries (blood vessels that carry oxygen-rich blood to all parts of the body). When the pressure in the arteries becomes too high, it is called high blood pressure or hypertension.

If you are 20 pounds or more overweight or if you have a family history of hypertension, you are at an increased risk to have high blood pressure yourself.

If you do have high blood pressure, there are a few lifestyle changes that you can make to get it under control, and to help prepare your body for pregnancy:
• Eat healthy foods and reduce your intake of salt, cholesterol, and saturated fats
• Exercise regularly
• Get to a healthy weight
• Don’t smoke or drink alcohol.

Not all medications for high blood pressure are safe to continue during pregnancy. If you are taking any prescriptions to manage your hypertension, make sure you discuss them with your doctor. You should never stop taking any medications without talking to your provider first.

About 8 percent of women have problems with high blood pressure during pregnancy. Although most health problems can be managed with regular prenatal care, pregnant women with high blood pressure are more likely than women without high blood pressure to have these complications:
• Low birthweight: when a baby weighs less than 5 pounds, 8 ounces. High blood pressure can narrow blood vessels in the uterus and your baby may not get enough oxygen and nutrients, causing him to grow slowly.
• Premature birth: birth that happens before 37 weeks of pregnancy. A pregnant woman with severe high blood pressure or preeclampsia may need to give birth early to avoid serious health problems for her and her baby.
• Placental abruption: the placenta separates from the wall of the uterus before birth. It can separate partially or completely. If this happens, your baby may not get enough oxygen and nutrients.

Work with your provider before and during your pregnancy to control your blood pressure. Making a few changes now can help you to have a safer, healthier pregnancy.

Sibling visits to the NICU can be helpful

04
Feb
Posted by Barbara

Sibling visits baby in NICUPrematurity affects everyone, including siblings. When older children have a sister or brother in the NICU (neonatal intensive care unit) they sense their parents’ concern and worry, and their lives are thrown off balance. Siblings of a preemies go through their own NICU journey of sorts – from experiencing anxiety, worry and frustration to happiness and joy. However, there are some steps you can take to help your older children through the ups and downs of the NICU experience.

If your baby is in the NICU, it may be possible for your other children to visit. Ask the head nurse of the NICU if the hospital allows this and if your preemie is strong enough for the visit. Often, seeing their baby brother or sister in the NICU helps older children understand what is happening and to realize why mom and dad are not home as much. Even a short visit can help put the situation into perspective. Visiting can also make siblings feel like they are a part of the journey and that they are helping out.

But, NICUs can seem scary to children, and seeing a tiny baby hooked up to monitors and tubes can be terrifying. Here are ideas (some from the Preemies book) to help make the visit successful. In all cases, get the permission of the NICU staff first:

• Have your older children send in a toy or drawing ahead of the visit, and display it prominently near your preemie’s bed. When your children arrive, they will see their presence and will feel an immediate connection.

• Describe your baby’s condition to your children before the visit. Perhaps show them a doll that is about the size of your preemie, so they are not too surprised when they see their tiny sibling.

• If it is possible, allow your children to touch the baby. Touch helps to establish a bond. Of course, the NICU nurse will tell you if this will be allowed or not, depending on your baby’s current medical condition.

• Ask if your children can talk, read a book, or sing a song to the baby (softly). It will give them the feeling of doing something positive to help.

• Ask if your hospital has a NICU Family Support Program. The March of Dimes partners with many hospitals in the United States. Such programs comfort and support families, including siblings. Some hospitals also have a corner where siblings can play as they wait while their parents visit. They may even meet other siblings in this play space, and be able to share their feelings with other kids who understand what they are experiencing.

There is no doubt about it – having a baby in the NICU is a difficult journey for the whole family. Hopefully, short visits will help your other children to understand, feel included and “help out”, which will in turn, lessen the mystery of having a little brother or sister in the NICU.

Additional information and support for families with babies in the NICU can be found at Share Your Story, the March of Dimes online community for NICU families. Also, see this blog post for helpful info on a father’s role in the NICU.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need,  select “Help for your child” on the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). You can also view a Table of Contents of prior posts. We welcome your comments and input.

If you have questions, please send them to AskUs@marchofdimes.org.

Baby’s genes may play a role in some premature births

03
Feb
Posted by Sara

MOD scienceSome babies seem to have a genetic predisposition to a higher risk of being born too soon. Changes in the baby’s DNA – not the mother’s – may be what triggers some early births.

In an exciting new study, researchers analyzed the number of copies of certain genes in the blood or saliva from hundreds of babies and their mothers. A gene is a part of your body’s cells that stores instructions for the way your body grows and works. What the scientists found may be somewhat surprising.  There was no link between the number of copies of the mother’s genes and the chances of a preterm baby. However, there was a two- to eleven-fold increase in premature births before 34 weeks of pregnancy when any of four genes were duplicated or seven genes were deleted in the babies born preterm, when compared to babies born full-term.

The researchers think that the differences in the number of copies of the genes may not be causing a preterm birth, but they may put a baby at a higher risk of infection or reacting to other harmful environmental factors that may trigger early labor and delivery.

“These findings may help explain what triggers early labor in some women even when they’ve done everything right during pregnancy and there’s no obvious cause for an early birth,” explained March of Dimes Chief Medical Officer Edward R. B. McCabe, MD, MPH. “The hope is that this finding may one day lead to a screening test to help identify which babies are at a higher risk of an early birth.”

Stay tuned for upcoming details. We will blog again when we have more information.

Does your baby have the right car seat?

02
Feb
Posted by Lauren

rear-facing car seatFinding the right car seat can be a challenge. There are so many different kinds and sizes, how do you know which car seat is right for your child’s age and weight? What should you do if you have a baby born prematurely? This guide can help:

Step 1: Find the right car seat

• Should you get a rear facing car seat? Forward facing? Booster seat? Click here to learn the kind you need as your child grows. This handy visual guide is also helpful; just click on each box for details.
• Next, find a car seat based on your child’s height and weight.
• Car seats are also rated on ease of use. This info may be helpful to narrow down the kind of seat to buy.

Step 2: Correctly install your car seat

A car seat that is not installed correctly can be hazardous to your child.

• Learn proper car seat installation based on the kind of seat you have.
• Click here to learn about the inch test and pinch test – two simple ways to see if the seat is installed properly.
• And, did you know child seat safety inspectors can check your child’s car seat to make sure it is safely installed? (I didn’t!) Check it out.

Step 3: Register your car seat

• You can receive updates and notices about possible recalls by registering your car seat. Here’s how.

Preemies and tiny babies

If you have a premature or low birth weight baby, take time to read these special recommendations and our blog post on tips for tiny babies.

The right car seat, installed and used correctly is a MUST to keep your child safe.

How can we prevent birth defects?

30
Jan
Posted by Sara

speak to your health care providerBirth defects are common, costly, and critical.
Common: Every 4 ½ minutes in the United States, a baby is born with a birth defect.
Costly: Hospital costs for children and adults with birth defects exceeds $2.6 billion. That does not include outpatient expenses.
Critical: Birth defects cause 1 in every 5 deaths during the first year of life. They can result in lifelong challenges and disabilities.

As Birth Defects Prevention Month draws to a close, let’s recap what we know and look at steps that can be taken to prevent them.

Preconception and pregnancy planning
We know that it essential for a woman to take an active role in planning her pregnancy.  If you are thinking of having a baby or if you may want to have children sometime in the future, it is important to make a PACT: plan ahead, avoid harmful substances, choose a healthy lifestyle, and talk to your doctor. You can read more here.

Changing a few behaviors now can make a big difference when you are ready to have a baby. It is best to get any preexisting medical conditions, such as diabetes and high blood pressure, under control before pregnancy. Some medications, such as opioid-based prescription pain medications, are not safe to use when you are pregnant. All of these concerns can be discussed with your doctor during a preconception checkup.

Folic acid fortification
It is well known that taking 400 micrograms of folic acid every day can help to reduce the risk of neural tube defects or NTDs (disorders of the brain and spine). Since the US mandated folic acid fortification of enriched cereal grain products in 1998, the rates of NTDs have decreased by 35%.  That means that there are 1,300 fewer NTDs each year as a result of fortification. And that translates into an annual cost savings of approximately $508 million.

Surveillance
State surveillance systems record the number of babies born with a birth defect each year. The information gained from these surveillance systems furthers research on the causes of birth defects. The data also helps researchers to better understand which populations are at highest risk for specific birth defects. This information can then be used by public health professionals, policymakers, and health care providers to implement prevention strategies.

Research
The March of Dimes is funding research to understand the causes of birth defects and to develop new ways to prevent and treat them. Some March of Dimes grantees are studying basic biological processes of development. A more advanced look at the process of development will help reveal what can go wrong along the way. Others researchers are conducting clinical studies aimed at finding ways to prevent or treat specific birth defects.

Birth Defects Prevention Month may be coming to an end, but there is still a lot of work to do. Go to the National Birth Defects Prevention Network to learn more.

Have you found your child’s passion?

28
Jan
Posted by Barbara

building with blocksWhen you have a child with special needs, your mind tends to always center on the milestones you hope your child will achieve, and often forget that there are many things your child can already do, and often do very well. It’s so easy to get wrapped up in therapy and homework. Often, you only see the areas that need improvement, and don’t see (for lack of time or energy) the areas of talent or achievement. (Does this sound familiar?) When this happens, it is time to pause and breathe. And better yet, change your focus to take time to celebrate.

My daughter always loved to dance – you name the kind -she did it. Then that passion moved to drama, which is where she really found her niche. As a tiny tot, she used to memorize the dialogue to different shows or movies, and then act them out with her dolls, word for word. Later in high school, she joined the theater troupe. For a kid who had a speech and language delay, seeing her speak on a stage (often reciting Shakespeare), was mind boggling to me. Theater was her passion, and despite any struggle she was experiencing at the time, her dancing or theater pulled her through, and ended her day on a happy note. Even now, as she is a young adult, she participates in community theater productions.

Keep introducing your child to new things

All children have interests and passions. Does your child take things apart and then put them back together? He may be mechanically inclined. Does he build spectacular Lego cities and characters? He may become an architect or builder one day. Does your child dress in awesome couture-like outfits, draw, paint, play an instrument, enjoy storytelling, or participate in sports? You get my point – the list is endless and the possibilities are limitless. If you do not see a passion at the moment, keep introducing her to new things and watch as one emerges.

Very oftwatering flowersen, your child’s passion can be cultivated so that it becomes more than just a pastime. But even if it doesn’t become something more substantial, the accomplishment of any hobby or interest is something to celebrate. Cultivating a talent is a process. Like a flowering bulb pushing up through the spring earth, one doesn’t know what color the blossom will be, or how big or sweet the smell. You just have to water it and give it sun and protection, and then watch as it blooms on its own.

So, this is a gentle reminder to pause, breathe and focus on the positive moments in your little one’s life. Then, sit back and enjoy the moment as you see your little one in a whole new light.

What is your child’s passion? How did you help her to find it? Please share your tips.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need,  select “Help for your child” on the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). You can also view a Table of Contents of prior posts. We welcome your comments and input.

If you have questions, please send them to AskUs@marchofdimes.org.

 

 

Measles outbreak continues

26
Jan
Posted by Lauren

Measles picture from the Public Health Image LibraryAre you and your family immunized against measles?

On my way to work today, I heard that the number of measles cases in the United States has continued to rise. At last count, there were 78 cases in 11 states. Most of those cases originated at Disneyland or Disney’s California Adventure theme park. Visitors who went to the parks in December 2014 who were infected with measles spread it to people who were unvaccinated.

What should you do?

If you or your child have not been vaccinated against measles, or if your child is under 12 months old, you need to take precautions. According to the California Department of Public Health: “Any place where large numbers of people congregate and there are a number of international visitors, like airports, shopping malls and tourist attractions, you may be more likely to find measles, which should be considered if you are not vaccinated. It is absolutely safe to visit these places, including the Disneyland Resort, if you are vaccinated.”

The only way to protect against measles is through immunization. The measles, mumps and rubella (MMR) vaccine protects against the measles disease, as well as the mumps and rubella diseases. Your baby gets the MMR vaccine in two doses: the first between 12 and 15 months, and the second between 4 and 6 years. Adolescents and adults should be up to date on vaccinations. If you are not sure if you have had the vaccine, talk with your health care provider.

Measles and pregnancy

If you are thinking of having a baby, and are not sure if you have been vaccinated, speak with your health care provider. A simple blood test can tell you what vaccines you may need. If you need to get the MMR vaccine, make sure you do so before becoming pregnant. Wait at least 1 month before trying to get pregnant after the shot. If you are already pregnant, get the MMR vaccine after you give birth.

Measles on the rise

Last year, the U.S. had a record number of measles cases. The Centers for Disease Control and Prevention (CDC) states there have been 644 confirmed measles cases reported for 2014 in the United States. This is the highest number of cases since the U.S. declared that measles was eliminated in 2000. Measles is still common in other parts of the world. International travelers may carry it to the U.S. where they can spread the disease to other people who have not been vaccinated.

As many as one in 20 children with measles develop pneumonia. This is the most common cause of death from measles in young children, according to the CDC. For every 1,000 children with measles, one or two will die.  Children under 5 and adults over 20 are at higher risk for getting complications from the measles virus, including hospitalization and death.

Symptoms of measles typically start to appear one to two weeks after exposure to the virus. Symptoms include a runny nose, watery eyes, cough, a high fever and finally a rash. Measles is so contagious that any child who is exposed to it and is not immune will most likely get the disease.

Special thanks to the CDC and the Public Health Image Library for permission to use the above photo of a boy’s face after three days with measles rash.

Painkillers and pregnancy don’t mix

23
Jan
Posted by Sara

pregnant2Did you know that a significant number of women of childbearing age fill prescriptions for narcotic painkillers each year? If a woman becomes pregnant while taking these medications, she is at an increased risk of having a baby with birth defects.

Opioid-based (narcotic) pain medications, such as codeine, oxycodone, hydrocodone, or morphine, are used to treat moderate to severe pain. Many women are unaware that the use of these medications during pregnancy, even when used as directed, may increase their chance to have a baby with a serious birth defect of the brain, spine, or heart. They also have an increased risk of preterm birth.  Use of opioid-based painkillers during pregnancy can also cause babies to suffer withdrawal symptoms when they are born. This is a condition known as neonatal abstinence syndrome or NAS, and it is a growing problem in U.S. birthing hospitals.

A new report from the CDC found that on average, about 28% of privately insured and 39% of Medicaid-enrolled women of child-bearing age filled a prescription for an opioid between 2008-2012.

Since half of all pregnancies are unplanned, women may be prescribed opioid-based pain medications before they know they are pregnant.  “This highlights the importance of promoting safer alternative treatments, when available for women of reproductive age. We must do what we can to protect babies from exposure to opioids,” stated Coleen A. Boyle, PhD, MSHyg, Director of CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD).

“If you are using an opioid painkiller, you should also be practicing effective birth control, “ says José F. Cordero, MD, MPH, a pediatrician, birth defects expert formerly at CDC, and member of the March of Dimes Board of Trustees. “If you decide to get pregnant or do become pregnant, tell your health care provider about all the medications you are taking, right away. You may be able to switch to a safer alternative.”

The CDC’s Treating for Two: Safer Medication Use in Pregnancy initiative offers information to women and their healthcare providers about medication use during pregnancy. Go here to get more information.

Tracking birth defects helps states help you

21
Jan
Posted by Barbara

Birth defects on PeriStats by stateDid you know that many states track and monitor birth defects? It is one way for them to better understand birth defects in order to try and prevent them. Today, I welcome guest blogger Melissa Gambatese, MPH, Research Analyst in the Perinatal Data Center here at the March of Dimes. Melissa will introduce you to the world of birth defects surveillance systems. It may sound a bit high tech or like something from a spy movie, but it is really a way for states to monitor birth defects and to hopefully use the information to help combat them and help families.

 

Every 4 ½ minutes a baby is born with a birth defect in the US. Birth defects are generally referred to as abnormalities of structure, function or metabolism (body chemistry) present at birth that result in physical or mental disabilities, or death. While some birth defects are caused by genetic conditions passed from the baby’s parents, the causes of most birth defects remain unknown.

The March of Dimes is committed to improving the health of babies by preventing birth defects. One of the ways to prevent birth defects is to better understand which populations are at highest risk for birth defects. This information allows public health professionals, policymakers, and health care providers to implement targeted prevention strategies. It also helps to provide adequate services to people affected by them. States monitor groups of people at risk for birth defects by establishing a surveillance system.

What is a surveillance system?

A surveillance system is a tool used in public health to collect information on a countless number of diseases and conditions. It provides a structure for identifying cases according to a standard definition. It also provides a way to analyze and then communicate surveillance findings to stakeholders, such as health care providers, researchers, and policymakers.

Surveillance systems can be passive, meaning they rely on physicians and medical staff to report cases to the state surveillance team, or active, meaning the state surveillance team reviews vital records, hospital diagnoses, and other data sources to identify cases.

Why do states have birth defects surveillance systems?

States use these systems to monitor trends in birth defects prevalence, or the number of babies born with a birth defect out of all live births born each year. States also use surveillance data to further research on the causes and prevention of birth defects and to link affected families to needed services.

States report surveillance data to the National Birth Defects Prevention Network (NBDPN), an organization of clinical and public health professionals dedicated to maintaining a network of state birth defect surveillance programs. Each year, NBDPN publishes a report containing prevalence data from all states with a birth defects surveillance system.

Do all states have a surveillance system?

The majority of US states (37 states and Puerto Rico) have a type of birth defects surveillance system.

Where can you find your state’s birth defects data?

Prevalence estimates reported by NBDPN for select states and birth defects are now available on PeriStats, the March of Dimes’ free statistical website. It contains the latest maternal and infant health-related data for the US.

Are birth defects preventable?

There is still so much we need to learn about preventing birth defects, but there are things that a woman can do before and during pregnancy to increase her chances of having a healthy baby. For example, it is known that maternal smoking causes a range of serious birth defects including heart defects, missing/deformed limbs, clubfoot, gastrointestinal disorders, and facial disorders (such as cleft lip/palate).

It is also known that folic acid taken before and early in pregnancy can help prevent certain defects of the brain and spine. Read this post to learn more ways to help prevent birth defects.

March of Dimes grantees are pursuing a variety of approaches aimed at preventing and improving treatment for many birth defects. Read about our research here.