Archive for the ‘Baby’ Category

Why do we have World Birth Defects Day?

Wednesday, March 1st, 2017

wbddlogoIn a day and age when many cures exist for diseases and conditions, it may seem hard to believe that birth defects still occur. Yet, unfortunately they do.

Every year, millions of babies around the world are born with a serious birth defect. In many countries, birth defects are one of the leading causes of death in babies and young children. Babies who survive and live with these conditions are at an increased risk for long-term disabilities and other health problems.

What are birth defects?

Birth defects are health conditions that are present at birth. They may change the shape or function of one or more parts of the body. Birth defects can cause problems in overall health, how the body develops, or how the body works.

There are thousands of different birth defects. The most common are heart defects, cleft lip and palate, Down syndrome and spina bifida. Our website has a list of common birth defects as well as examples of rare birth defects.

We don’t know all the reasons why birth defects occur. Some may be caused by the genes you inherit from your parents. Others may be caused by environmental factors, such as exposure to harmful chemicals. Some may be due to a combination of genes and environment. In most cases, the causes are unknown.

Why #WorldBDDay?

The goal of World Birth Defects Day is to expand birth defects surveillance, prevention, care, and research worldwide. Naturally, the goal is to raise awareness, too.

You can help.

  • Lend your voice! Register with your social media account and Thunderclap will post a one-time message on March 3rd. The message will say “Birth defects affect 3-6% of infants worldwide. It’s a major cause of death/disability. Lend your voice!”
  • Join the Buzzday on Twitter, March 3, 2017 by using the hashtag #WorldBDDay.

With your help, we’ll raise awareness, which is the first step in improving the health of all babies.

What we’re doing

The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Our research grantees have discovered genes that cause or contribute to a number of common birth defects, including fragile X syndrome, cleft lip and palate, and heart defects. These discoveries may one day lead to interventions so that some birth defects can be prevented.

The March of Dimes offers information about how to have a healthy pregnancy on our website and this blog.

We answer health questions from the public through AskUs@marchofdimes.org, and promote messaging on our Twitter handles, @modhealthtalk, @nacersano (in Spanish) and @marchofdimes.

We welcome your comments and questions.

Rare Disease Day is February 28th. What makes a disorder rare?

Monday, February 27th, 2017

rare-disease-dayAny disease, disorder, illness or condition affecting fewer than 200,000 people in the U.S. is considered rare. The National Organization for Rare Disorders (NORD) says there are about 7,000 rare diseases and disorders which affect roughly 30 million Americans. That’s 1 in 10 people, and more than half of them are children.

Why is rare disease awareness so important?

It is often very hard to diagnose a rare disease and it can take a long time for a correct diagnosis to be made.

Then, even if someone receives a diagnosis, 95% of the conditions have no treatment or cure (which means that only 5% of affected people have a treatment option). As a result, many infants or children die from rare disorders.

Individuals living with a rare disease move through life without getting answers to their most basic questions.

Here are a few examples of rare diseases:

Agenesis of Corpus Callosum (ACC)

This rare disorder is present at birth. The corpus callosum, which connects the left and right sides of the brain, is partially or completely absent. The cause of this condition is usually not known but it can be inherited. Symptoms include delays in reaching developmental milestones, seizures, feeding problems and impairment of mental and social development. Treatment is based on supporting an individual’s symptoms, such as therapies that focus on left/right coordination. Early diagnosis and interventions offer the best chances of improvement.

Klippel-Feil syndrome (KFS)

KFS is a skeletal disorder with an abnormal union of two or more bones in the spinal column within the neck. This can cause some affected individuals to have an abnormally short neck with restricted movement. KFS seems to occur randomly for unknown reasons, although in some cases it may be inherited. Treatment is based on an individual’s specific symptoms, and may include surgery and physical therapy.

Progeria, or Hutchinson-Gilford progeria syndrome (HGPS)

According to NORD, progeria is a fatal, genetic condition of childhood that resembles premature aging. In most cases, it is not passed down in families. The gene change that causes the condition is almost always a chance occurrence that is extremely rare. “In 2012, the results of the first-ever clinical drug trial for children with progeria revealed that Lonafarnib, a type of farnesyltransferase inhibitor (FTI) originally developed to treat cancer, was shown to be effective for progeria. Other than Lonafarnib, which is not FDA-approved and thus only available through clinical drug trials, the treatment of HGPS is directed toward the specific symptoms that are apparent in each individual.”

Tay-Sachs

This condition is an inherited disease that affects a baby’s central nervous system (the brain and spinal cord). The central nervous system controls how the body works. There is no cure for Tay-Sachs, and a baby with Tay-Sachs usually dies by the time he is 4 years old. We have information about this disease on our website.

NORD provides information on many rare diseases.

#RareDiseaseDay

Rare Disease Day is always on the last day of February each year. This year it’s on February 28th and the focus is on research. The slogan is “With research, possibilities are limitless.” And it’s true, research can help discover treatments and in some cases cures. Research can give hope to people living their day-to-day lives in search of answers.

See rarediseaseday.us or NORD for more info.

Why reading aloud to your baby is so important

Thursday, February 16th, 2017

AA baby mom dad brother in NICU.jpg.resizedDid you know that reading to your baby helps promote language skills? Science has shown that reading to your baby helps build vocabulary, speech, and later reading comprehension, literacy and overall intelligence. Yet, less than half of children under the age of 5 are read to every day.

Reading aloud to your child is such an important aspect of language development that the American Academy of Pediatrics (AAP) offers guidance on how to read to your child, including book suggestions for every age.

But what if your baby is in the NICU?

Even if your baby is in the Newborn Intensive Care Unit (NICU), it is still incredibly valuable to read to him. The March of Dimes is partnering with Jack and Jill of America, Inc. to provide books to families who have a baby in a NICU. Parents are encouraged to choose books and read to their babies as often as they can.

In this resource, the AAP explains “Why it is never too early to read with your baby.” They say: “When parents talk, read, and sing with their babies and toddlers, connections are formed in their young brains. These connections build language, literacy, and social–emotional skills at an important time in a young child’s development. These activities strengthen the bond between parent and child.”

Why start reading today?

Today is World Read Aloud Day, a perfect time to start a new routine of reading to your child.

If you’re not sure what to read, you can ask your local librarian in the children’s room. You can also acquire books for a home library at second hand stores or even recycling stations. The “dump” in the town where I raised my kids has a book shed where you can drop off or pick up used books for free. And don’t forget, garage or yard sales are great places to get books for nickels. Having a mini-library at home has been shown to help children get off on the right academic foot.

But perhaps the best reason to read to your child is because it brings you together. The snuggles and cuddles, laughter and silliness that may result from reading a wonderful book, brings happiness to both parent and child.

Whether it is in the NICU or at home, reading aloud to your child is one of the most powerful things you will ever do. So grab a book, snuggle up, and enjoy!

 

Is breastfeeding a preemie different than a full term baby?

Friday, February 3rd, 2017

preemieThe answer is yes.

You’ve probably spent the last few months anxiously getting ready for your baby’s arrival. You’ve probably also thought about and decided how you are going to feed your baby after birth. Unfortunately, your breastfeeding plans may need to change in order to accommodate your baby, if you gave birth prematurely (before 37 weeks of pregnancy).

Breastfeeding in the NICU

If your baby is in the NICU, you may need to start pumping to establish your milk supply. Although you won’t have your warm baby at your breast, give your baby any expressed colostrum or milk you produce. Breast milk provides many health benefits for all newborns, but especially for premature or sick babies in the NICU.

Read our tips and tricks to breastfeeding your baby in the NICU.

Late preterm babies

If your baby was born late preterm, between 34 weeks and 0 days and 36 weeks and 6 days of pregnancy,  the good news is that she may not need to spend any time in the NICU. The bad news is that breastfeeding a near-term baby can be very difficult. Late preemies are often very sleepy and lack the energy they need to latch, suck and swallow. Also, late preterm babies are vulnerable to hypothermia (low body temperature), hypoglycemia (low blood sugar), weight loss, slow weight gain and jaundice among other conditions, which may interrupt your breastfeeding progress.

Full term babies

Breastfeeding a full term baby has its challenges, too. But, compared to a preterm or late preterm baby, there are more opportunities to be successful with breastfeeding from the start, due to fewer health obstacles.

Stay positive

If your baby is spending time in the NICU or having trouble breastfeeding, the breast milk you provide your baby through expression or pumping is very beneficial to his growth and protection from illness and infection. Seek help when you need it through a Lactation Consultant, a nurse or your health care provider. If you are in the hospital, ask your nurse if they have a support group where you can connect and share with other moms going through the same situation.

Learn more in Breastfeeding 101.

Have questions? Text or email us at AskUs@marchofdimes.org.

 

Key messages from Birth Defects Prevention Month

Monday, January 30th, 2017

MOD dad and babyWe’ve had a busy month spreading the word about birth defects and what you can do to have a healthy pregnancy. If you’ve missed some posts, here’s a one page cheat sheet of key messages.

Birth defects are more common than you’d think.

  • 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 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.
  • 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. Here’s how:multivitamin

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.

 

Parent navigators – a lifeline for NICU moms and dads

Tuesday, January 17th, 2017

Preemie on oxygen.jpg resizedIf you’re the parent of a baby born prematurely, you know the stress and anxiety that is a part of having your baby in the Neonatal Intensive Care unit (NICU).  Even if the entire NICU staff is super supportive and answers your every question, you may still feel like you’re on an ocean in a life raft without oars or directions. The feeling can be overwhelmingly scary.

Then, once your baby is discharged from the NICU, you may begin a whole new journey of medical visits, specialists, therapies, and figuring out the complex world of health insurance. If your baby has special healthcare needs, these next steps may be confusing at best.

Enter Parent Navigation Programs. These are programs designed to assist parents of children with special healthcare needs. The hook is that parents are assisting parents. The parent navigators have been in their shoes, as they have children with special healthcare needs.

One of our NICU Family Support Partner hospitals, Children’s National Health System in Washington D.C., employs parent navigators to provide support to parents of children with complex medical conditions. They help the parents of newly diagnosed babies or young children navigate the complicated healthcare system to get the care their child needs and to access vital community resources. And, perhaps the best part is that these parent navigators provide the emotional support that only another parent of a special needs child can fully understand.

Children’s National started their Parent Navigator Program in 2008, and is now launching a new program aimed specifically towards parents of newborns in the NICU. These babies may be born prematurely (before 37 weeks of pregnancy), with complex medical conditions and/or with birth defects.

“This short-term, peer-to-peer “buddy” program looks to decrease stress, anxiety and depression in mothers of NICU babies during hospitalization” says Michelle Jiggetts, MD, MS, MBA, Program Administrator of the Complex Care Program and the Parent Navigator Program at Children’s National.

The success of this new program will be measured scientifically, by looking at the differences between parents who leave the NICU with a parent navigator, and those who do not. They will measure caregiver stress, anxiety and depression, as well as the amount of healthcare services a baby uses after leaving the NICU. The hope is that the group that had the benefit of a parent navigator for a year following their baby’s hospital discharge, will fare better overall – both parents and baby. You can learn more about this unique program, here.

According to Dr. Jiggetts, the parent navigator’s role is to:

  1. Provide peer-to-peer mentoring and support
  2. Link families to community resources and support groups
  3. Coach parents to be active partners and communicate effectively with health care providers
  4. Suggest useful tools (e.g. care notebooks) to help organize medical information
  5. Help families navigate the healthcare system and insurance issues
  6. Encourage families to focus on self-care

It seems like a no-brainer that a program like this will be incredibly helpful. As we all know, babies don’t come with instruction manuals, and infants with special healthcare needs have their own intense challenges. Having a peer “buddy” available to provide the low-down each step of the way must be a life-line that any parent would appreciate, but especially a parent of a preemie or baby with a health condition.

Even though you’re in a life raft on that ocean, you’ve now been given oars and a compass, and land is in sight.

 

Update! New guidelines on how to prevent peanut allergies in your baby

Monday, January 9th, 2017

peanut butterPeanut allergies have become a hot topic and for good reason. These allergies can be severe and lifelong.

I remember when I was in school, before my math class we would have to dispose of all peanut products before stepping into the room because a student had a peanut allergy. Even when all products were thrown in the garbage, if the food got in the air, it caused her to have a reaction and she needed to leave class immediately. For those people with a peanut allergy, it can seriously affect their everyday lives.

But good news has just arrived. New clinical guidelines have been issued to help prevent the development of a peanut allergy in children.

Why was there a change in the recommendations?

A new study involving more than 600 babies ages 4-11 months found that those infants who avoided peanut products had a higher rate of peanut allergy than those who ate peanut-products.

Babies and children (up to age 5)  who regularly ate peanut products were less likely to develop a peanut allergy. Specifically, high risk infants (babies who had severe eczema or inflammation of the skin and/or an egg allergy) had an 81% reduction in the development of a peanut allergy.

What are the new guidelines?

  1. Infants who are at high risk of developing a peanut allergy and already have severe eczema, egg allergy or both, should have peanut-containing foods introduced into their diet as early as 4-6 months of age to reduce the risk of developing the allergy. But be sure to speak with your baby’s provider before beginning this process.
  2. Infants with mild to moderate eczema should have peanut-containing foods introduced into their diets around 6 months of age to reduce the risk of peanut allergy.
  3. Infants without eczema or any food allergy can have peanut-containing foods introduced into their diets at any time after solids have successfully been introduced.

Important:  In all cases, your baby should start other solid foods before introducing peanut-containing foods. Never give whole peanuts or peanut pieces to children under the age of four. Be sure to speak with your baby’s health care provider before making any changes to your baby’s diet. For more information about peanut allergies, see this article from the American Academy of Pediatrics.

Have questions about these new guidelines? Text or email us at AskUs@marchofdimes.org.

Can the benefits of kangaroo mother care last into adulthood?

Tuesday, December 13th, 2016

kangaroo-care-21Parents who have had a baby in the NICU are familiar with kangaroo care or skin-to-skin care. Kangaroo care is a way to hold your baby so that there is as much skin contact between you and your baby as possible. It has wonderful benefits for parents and preemies. A new study shows that the benefits of an intensive form of kangaroo care, kangaroo mother care (KMC), may last into adulthood.

Kangaroo mother care was initially developed in Bogota, Columbia in the late 1970s. It was initiated in response to a shortage of incubators and a high rate of severe hospital infections. KMC involves continuous skin-to-skin contact, exclusive breastfeeding (or nearly exclusive), and timely (early) discharge with close follow-up. At the time, this was a revolutionary idea and very different than the typical practice of limited parental access to premature and low-birthweight infants. From 1993-1996 a study was conducted to scientifically prove the benefits of kangaroo mother care. It found that the survival, growth, development, and other selected health-related outcomes were equal to or better than those of infants cared for in a traditional manner.

The same researchers have now done a follow-up study of these children to see if the benefits of KMC have lasted into adulthood. They again compared the groups who had kangaroo mother care vs. traditional care. The researchers found that the KMC group had “significant, long-lasting social and behavioral protective effects 20 years after the intervention.” They were less aggressive, less impulsive, and less hyperactive than the group that did not receive KMC.

More studies are needed to help better understand how KMC influences long-term outcomes. But we know that kangaroo care has immediate benefits for both parents and babies while they are in the NICU. Kangaroo care may help your baby:

  • Keep his body warm
  • Keep his heart rate and breathing regular
  • Gain weight
  • Spend more time in deep sleep
  • Spend more time being quiet when awake and less time crying
  • Have a better chance of being able to breastfeed

And, kangaroo care may help you:

  • Make more breast milk
  • Reduce your stress
  • Feel close to your baby

Kangaroo care can be beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby.

Have questions? Text or email us at AskUs@marchofdimes.org.

See how your state is doing on childhood vaccination rates

Wednesday, December 7th, 2016

baby vaccinationYou know that vaccines are very important. They protect your baby from serious childhood illnesses. Over the years vaccines have prevented countless cases of disease and saved millions of lives.

However, immunization rates across the United States vary. In order to show how vaccination rates differ among individual states, the American Academy of Pediatrics (AAP) has developed an interactive digital map that shows state immunization rates for vaccine-preventable diseases, including:

  • Flu: The best way to protect your baby from the flu is to make sure he gets a flu shot each year before flu season (October through May). Even though your baby’s more likely to get the flu during flu season, he can get it any time of year. The flu shot contains a vaccine that helps prevent your baby from getting the flu. Children older than 6 months can get the flu shot. Your baby gets two flu shots in his first year life. He then gets one shot each year after.
  • Varicella: This vaccine protects your child from chickenpox, an infection that spreads easily and causes itchy skin, rash and fever.
  • Diptheria, Tetanus, and Pertussis (DTaP): Diptheria causes a thick covering in the back of the throat and can lead to breathing problems, paralysis, heart failure, and even death. Tetanus (lockjaw) is a serious disease that causes painful tightening of the muscles, usually all over the body. And pertussis (also called whooping cough) is a highly contagious respiratory tract infection that is dangerous for a baby.
  • Measles, mumps and rubella (MMR): This vaccine protects your baby against measles, mumps and rubella (also called German measles). Measles is a disease that’s easily spread and may cause rash, cough and fever. Mumps may cause fever, headache and swollen glands. Rubella causes mild flu-like symptoms and a skin rash.
  • HPV (human papillomavirus): This vaccine protects against the infection that causes genital warts. The infection also may lead to cervical cancer. The CDC recommends that women up to age 26 get the HPV vaccine.

According to the AAP, “The map also highlights recent outbreaks of disease that have occurred in communities where pockets of low-immunization rates left the population vulnerable. While immunization rates have remained steady or increased for many vaccines over the past decade, recent studies show that unvaccinated children are often geographically clustered in communities. These pockets of under-immunization are at higher risk of disease and have been the source of disease outbreaks, as seen with the 2014 measles outbreak in California.”

Vaccines don’t just protect the person who receives them, but they also protect more vulnerable populations, such as infants and children who cannot be vaccinated for medical reasons.

Check out the map to find out what the childhood vaccination rate is in your state and how it compares to others. And remember to make sure that you and your children are up to date on all your vaccinations!

Have questions? Text or email us at AskUs@marchofdimes.org.

Looking for a reason to get a flu shot? Here are 10 good ones.

Monday, December 5th, 2016

DoctorPregnant_zps3ac96800Many myths abound about whether a flu shot is important. Here are 10 facts that should convince you that a flu shot is good for you and your family:

  1. Flu can be life threatening. Children younger than 5, and especially kids younger than 2 are at a higher risk of complications from flu.
  2. Children of any age with long term health conditions, including developmental disabilities, are at a higher risk of serious problems from flu.
  3. Children with neurologic conditions, and kids who have trouble with lung function, difficulty coughing, swallowing or clearing their airways can have serious complications from flu.
  4. Pregnant women can have consequences from flu that include miscarriage, preterm labor, premature birth or giving birth to a baby with a low birthweight. It’s safe to get a flu shot any time during pregnancy.
  5. Babies can’t get their own flu shot until they are at least 6 months of age. This is another reason why women should get a flu shot during pregnancy. The protection will pass to the baby when she is born.
  6. Since babies are at risk until they’re vaccinated, protect them by making sure the people around them are vaccinated – all caretakers, family members and relatives.
  7. Adults older than age 65 (grandparents!) can suffer serious consequences from the flu.
  8. You don’t get the flu from the flu shot. It is made up of inactivated (dead) flu virus. You may experience soreness at the injection site, have a headache, aches or a fever but these symptoms should go away within a day or two. The flu lasts much longer and is more severe.
  9. Aside from barricading yourself in a room all winter long (?!) the best way to protect yourself from flu is to get vaccinated.
  10. This year, the flu vaccines have been updated to better match circulating viruses. There are also different options available, including one for people with egg allergies. Your healthcare provider can advise you.

So, what are you waiting for? Go get protected!

Here’s more info about people at high risk of developing flu-related complications and answers to frequently asked questions can be found here.