Breastfeeding a baby with a cleft lip/palate

11
Aug
Posted by Lauren

mom loving babyA cleft lip is a birth defect in which a baby’s upper lip doesn’t form completely and has an opening. A cleft palate is a similar birth defect in a baby’s palate (roof of the mouth). A baby can be born with one or both of these defects. If your baby has a cleft lip, a cleft palate, or both, he may have trouble breastfeeding. It is normal for babies with a cleft lip to need some extra time to get started with breastfeeding. If your baby has a cleft palate, he most likely cannot feed from the breast. This is because your baby has more trouble sucking and swallowing. You can, however, still feed your baby pumped breast milk from a bottle.

Your baby’s provider can help you start good breastfeeding habits right after your baby is born. The provider may recommend:

• special nipples and bottles that can make feeding breast milk from a bottle easier.

• an obturator. This is a small plastic plate that fits into the roof of your baby’s mouth and covers the cleft opening during feeding.

Here are some helpful breastfeeding tips:

• If your baby chokes or leaks milk from his nose, the football hold position may help your baby take milk more easily. Tuck your baby under your arm, on the same side you are nursing from, like a football. He should face you, with his nose level with your nipple. Rest your arm on a pillow and support the baby’s shoulders, neck and head with your hand.

• If your baby prefers only one breast, try sliding him over to the other breast without turning him or moving him too much. If you need, use pillows for support.

• Feed your baby in a calm or darkened room. Calm surroundings can help him have fewer distractions.

• Your baby may take longer to finish feeding and may need to be burped more often (2-3 times during a feed).

• It may help to keep your baby as upright as possible during his feeding. This position will allow the milk to flow into his stomach easier, which will help prevent choking.

How breastfeeding can help your baby:

• His mouth and tongue coordination will improve, which can help his speech skills.

• His face and mouth muscles will strengthen, leading to more normal facial formation.

• If your baby chokes or leaks milk from his nose, breast milk is less irritating to the mucous membranes than formula.

• Babies with a cleft tend to have more ear infections; breast milk helps protect against these infections.

If your baby is unable to breastfeed: 

• Feed your baby with bottles and nipples specifically designed for babies with clefts. Ask your baby’s health care provider for recommendations.

If you are concerned if your baby is getting enough to eat, or if he is having trouble feeding, speak with a lactation counselor, your baby’s provider or a nurse if you are still in the hospital.

If you have any questions about feeding your child with a cleft lip or palate, email us at AskUs@marchofdimes.org.

 

Vaccinations protect against HPV

08
Aug
Posted by Sara

immunizationsHuman papillomavirus (HPV) is a common virus that is spread through sexual contact. There are about 40 types of HPV. Some types of HPV cause genital warts in both men and women. Others can increase a woman’s chance of cervical cancer and can cause other types of cancer in both men and women. However, a vaccine is available that can help prevent HPV infection.

HPV is a sexually transmitted disease (STD). Sexually transmitted diseases are infections that you can get from having sex with someone who is infected. You can get a STD from vaginal, anal or oral sex. HPV is the most common sexually transmitted infection in the United States. According to the CDC, “HPV is so common that nearly all sexually active men and women get it at some point in their lives.” At this time, about 79 million Americans are infected with HPV and approximately 14 million people become infected each year.

In most cases, HPV goes away on its own and many people do not know they were ever infected. If HPV does not go away, however, then it is possible to develop genital warts or cancer. Unfortunately there is no way to know if you will develop cancer or other health problems if you have HPV.

Get vaccinated
One of the easiest ways you can reduce your risk of getting HPV is to get vaccinated. Two vaccines against HPV are available in the US. The vaccines are recommended for girls and boys between the ages of 11 to 12 years old.  Vaccination is also recommended for teen girls and young women through age 26 and teen boys through age 21, if they did not get the vaccine when they were younger.

Both vaccines protect against the two types of HPV that cause most cases of cervical cancer. One vaccine also protects against two additional types of HPV that cause most genital warts. The HPV vaccine is not recommended during pregnancy.

If you have HPV and get pregnant, you can get genital warts or develop abnormal cell changes on your cervix. These changes can be found during routine cervical cancer screening, such as a Pap smear. At your first prenatal checkup, your doctor will do a Pap smear to check for cervical cancer and other tests for vaginal infections.

Laughter helps your body, mind and mood

06
Aug
Posted by Barbara

woman laughing“I love to laugh.” That is a famous line in the movie Mary Poppins.  It is sung by the character Uncle Albert, who is floating on the ceiling due to his incessant laughing. The very image of the scene makes me laugh. Over the years, there have been some studies that show laughter is good for you. The more you laugh, the happier you may be – just like the song says.

Here are some of the lyrics:

I love to laugh
Loud and long and clear
I love to laugh
It’s getting worse every year

The more I laugh, the more I fill with glee
And the more the glee
The more I’m a merrier me
The more I’m a merrier me

(Songwriters Richard Sherman; Robert Sherman, Published by Wonderland Music Company, Inc.)

How does laughter help?

In my post last week, I mentioned how moms of kids with special needs need special care. The chronic stress and pressure associated with caring for a child with multiple needs can take an enormous emotional, physical and mental toll. Taking frequent breaks or respites, keeping up with hobbies, exercise and friendships can help to restore balance in your world. And, frequent laughter is being shown to have many benefits, too.

Laughter can lift your mood. It can lower the stress hormone cortisol and release endorphins and dopamine (which make you feel happy). It can ease tension in your muscles. Laughter can increase blood flow which helps with cardiovascular health, and lower your blood pressure. It may even help improve short term memory. That’s a lot of health benefits from a fit of laughter.

How much is enough?

It appears from the research that just 20 – 30 minutes of viewing a funny video or TV show can have a positive effect on your body and mind. There is no known downside to laughing – no contraindications. It is easy to laugh and can make you feel better instantly. It is an inexpensive, fun way to lift your spirits.  And, science is showing that it has real physiological benefits.

So, why not give it a try today – click on a favorite video or TV show for a while, fill with glee, and become a merrier you!

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 and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input.

Breastfeeding your baby in the NICU can be challenging

04
Aug
Posted by Lauren

feeding in the NICUMost babies, even those born very premature can learn to breastfeed. Breast milk provides many health benefits for all newborns, but especially for premature or sick babies in the NICU. Feeding a preemie may be much different than what you had planned. If you must pump, you may feel disappointed that you are not able to feed your warm baby on your breast. But, providing breast milk for your preemie is something special and beneficial that you can give him.

Here are tips to help you breastfeed your preemie while in the NICU.

If your baby is unable to feed or latch:

• Start pumping as soon as you can to establish your milk supply. Ask a nurse for a pump and assistance.

• If your preemie is tube feeding, your baby’s nurse can show you how to give your baby his feedings.

• Pump frequently, every 2 to 2-1/2 hours around the clock for a couple of days and nights (or 8 to 12 times during the day, so you can catch some sleep at night).

• Practice skin to skin or kangaroo care if your nurse says it is ok. Both are beneficial, even if your baby is connected to machines and tubes.

If your baby is able to suckle:

• Ask to feed him in a quiet, darkened room, away from the beeping machines and bright lights.

• Many mothers find the cross cradle position very helpful for feedings. Start with kangaroo care. Then position the baby across your lap, turned in towards you, chest to chest. Use a pillow to bring him to the level of your breast if you need to.

• Preemies need many opportunities at the breast to develop feeding skills regardless of gestational age. This requires practice and patience.

• You may need increased support to breastfeed your preemie. Look for support from your nurses, the hospital’s lactation consultant, friends or family.

Not every tip will work for every mom. Try to find the feeding methods and solutions that work best for you and your preemie. More information on how to feed your baby in the NICU can be found here.

If you have questions about how to feed your baby, email us at AskUs@marchofdimes.org.

Vaccinations before, during and after pregnancy

01
Aug
Posted by Sara

vaccine1If you are pregnant or planning a pregnancy, it is very important to make sure that you are up-to-date on all of your vaccinations. Vaccines help protect your body from infection. You pass this protection to your baby during pregnancy. This helps keep your baby safe during the first few months of life until he gets his own vaccinations.

Vaccinations also protect you from getting a serious disease that could affect future pregnancies. You probably got vaccinations as a child. But they don’t always protect you for your entire life. Or there may be new vaccinations that weren’t available when you were young. Over time, some childhood vaccinations stop working, so you may need what’s called a booster shot as an adult.

Before pregnancy

Here are some vaccines that are recommended before pregnancy:

• Flu. Get the flu shot once a year during the flu season (October through May). It protects you and your baby against both seasonal flu and H1N1, a kind of flu that spread around the world in 2009. If you come down with the flu during pregnancy, you’re more likely than other adults to have serious complications, such as pneumonia.

• HPV. 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.

• MMR. This vaccine protects you against the measles, mumps and rubella. Measles can be harmful to pregnant women and cause miscarriage.

• Tdap. This vaccine prevents pertussis (also called whooping cough). Pertussis is easily spread and very dangerous for a baby. If you’re thinking about getting pregnant, ask your provider about getting the Tdap vaccine.

• Varicella. Chickenpox is an infection that causes itchy skin, rash and fever. It’s easily spread and can cause birth defects if you get it during pregnancy. It’s also very dangerous to a baby. If you’re thinking about getting pregnant and you never had the chickenpox or the vaccine, tell your provider.

During pregnancy

The Centers for Disease Control and Prevention (CDC) recommends two vaccinations during pregnancy:

1. Flu vaccine if you weren’t vaccinated before pregnancy

2. Tdap vaccine during each pregnancy at 27 to 36 weeks

Not all vaccinations are safe to get during pregnancy. Do not get these vaccines during pregnancy:

• BCG (tuberculosis)

• Memingococcal

• MMR

• Nasal spray flu vaccine (called LAIV). Pregnant women can get the flu shot, which is made with killed viruses.

• Typhoid

• Varicella

After pregnancy

If you didn’t get the Tdap vaccine before or during pregnancy, you can get it right after you give birth. Getting the Tdap vaccine soon after giving birth prevents you from getting pertussis and passing it on to your baby. This vaccine is also recommended for caregivers, close friends, and relatives who spend time with your baby. Your baby should get his first pertussis vaccine at 2 months old. Babies may not be fully protected until they’ve had three doses.

Here’s a link to a chart to help you know when you can get certain vaccinations if you need them. Talk to your health care provider about vaccinations you need before, during or after pregnancy.

Preemies and hearing loss

30
Jul
Posted by Barbara

baby's earNearly 3 in 1,000 babies (about 12,000) are born with some kind of hearing loss in the United States each year. Most babies get their hearing checked as part of newborn screening before they leave the hospital. Newborn screening checks for serious but rare conditions at birth.

If your baby doesn’t pass his newborn hearing screening, it doesn’t always mean he has hearing loss. He may just need to be screened again. If your baby doesn’t pass a second time, it’s very important that he gets a full hearing test as soon as possible and before he’s 3 months old.

The risk of hearing loss is significantly higher in babies born with a very low birth weight (less than 1500 grams). However, hearing loss can be caused by other factors, such as genetics, family history, infections during pregnancy, infections in your baby after birth, injuries, medications or being around loud sounds. See our article  to learn more about the different causes of hearing loss.

Possible treatments

Different treatments are available depending on your child’s level of hearing loss, his health, and the cause of the hearing loss. They include medication, surgery, ear tubes, hearing aids, cochlear implants, learning American Sign Language and receiving speech therapy.  The article on our website discusses each of these types of treatments.

If a child needs speech therapy, it can usually be provided through the early intervention program for babies and toddlers. Read this post to understand how to access services. The sooner your child gets help, the sooner language skills will emerge and improve.

If you need more detailed information, check out these sites:

Early Hearing Detection and Intervention (EHDI) Program

Individuals with Disabilities Education Improvement Act 2004 (IDEA 2004)  

Hearing loss treatment and intervention services

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 and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input.

 

The do’s and don’ts of bottle-feeding

28
Jul
Posted by Lauren

bottle-feeding babyWe all know breastfeeding is best for your baby, but if your baby is taking formula from a bottle, it is important to make sure each feeding is safe and clean.

Powdered infant formula is not sterile. It could contain bacteria that can cause serious illness to your baby. By preparing and storing formula properly and sterilizing bottles, you can reduce the risk of infection.

Here are some tips for keeping bottle-feeding safe for your baby:

• Boil bottles and nipples for 5 minutes before you use them for the first time. After the first use, wash them for 1 minute in hot, soapy water and rinse after each use. This removes harmful bacteria that can grow and make your baby sick.

• To be sure your baby’s formula is sterile, feed her prepared liquid formula, especially when she is a newborn.

• Wash your hands before preparing each bottle.

• When you first open your formula container, make sure it is sealed properly. If it is not sealed, return it to the store.

• Check the “Use By” date on the formula package. Do not use it if it has expired.

 If you are using powdered formula:

• The safest way to prepare formula is to boil the water before use. Allow the water to cool down before mixing with formula. If you do not boil the water, prepare the formula with sterilized bottled water.

• Avoid mixing up large amounts of formula at one time.

• Be sure to use the right amount of water to mix with your baby’s formula. Read the directions on the packaging label. Too much water may keep your baby from getting the right amount of nutrients she needs to grow. Too little water may cause diarrhea or dehydration.

For all bottles:

• Don’t heat formula in the microwave. Some parts can heat up more than others and burn your baby. You can warm or cool the bottle by holding it under running water. Make sure the running water is below the lid of the bottle. Then, shake the bottle to mix the formula to avoid hot spots.

• To keep bacteria from growing, don’t leave formula out of the refrigerator for more than 2 hours. If you do not plan to feed your baby right away, refrigerate the bottle until the feeding.

• If you plan to make a bottle of formula in advance to use later, prepare the feedings separately and put them in the refrigerator until they are needed. Throw away unused formula that has been in the fridge for more than 24 hours.

• If your baby does not finish the entire bottle of formula, discard the remaining formula.

•  If you are traveling, keep the prepared formula cold by placing the bottle in a lunch bag with ice packs.

For more information on how to prepare bottles safety, visit the World Health Organization’s guidelines for cleaning, sterilizing & storing. For information about formulas and what to ask your baby’s doctor, visit our website.

For information on safe handling and storage of breast milk, visit our blog.

If you have questions about bottle-feeding safety or other pregnancy and newborn health questions, email us at AskUs@marchofdimes.org

Phenylketonuria (PKU)

25
Jul
Posted by Sara

newborn-screening-picture1Phenylketonuria (also called PKU) is a condition in which your body can’t break down an amino acid called phenylalanine. All babies born in the United States are tested for PKU through the newborn screening program in their state.

What is phenylalanine? 

Phenylalanine is an essential amino acid. Amino acids are building blocks for proteins. Our bodies need amino acids for proper growth and development but we cannot make them on our own. We need to get them from food sources. Phenylalanine is found in most foods that contain protein. This includes beef, poultry, fish, soy products, eggs, cheese, etc.

Once phenylalanine is in the body, it is converted into tyrosine, another amino acid. Tyrosine is then used by the body in a variety of ways, including the formation of chemicals that are necessary for your brain to function properly.

Why is phenylalanine harmful for people with PKU?

If your baby is born with PKU, she cannot break down phenylalanine. Phenylalanine then builds up in the blood and interferes with normal brain development. Without treatment, babies born with PKU begin to have signs of the condition at about 6 months of age. These include:

  • Jerky movements in arms and legs
  • Seizures
  • Skin rashes
  • Small head size
  • Developmental delays and behavioral problems

What causes PKU?

PKU is inherited. This means it’s passed from parent to child through genes. A gene is a part of your body’s cells that stores instructions for the way your body grows and works. Genes come in pairs—you get one of each pair from each parent. Sometimes a change in a gene can cause it to not work correctly. This change is known as a mutation.

Your baby has to inherit a mutation for PKU from both parents to have PKU. If she inherits the mutation from just one parent, your baby is called a PKU carrier. A PKU carrier has one copy of the mutation but doesn’t have PKU.

How is PKU treated?

If your baby is diagnosed with PKU, then she will need to be on a special diet that significantly reduces the amount of phenylalanine she consumes. Ideally the diet would begin in the first few days of life. Babies who have PKU may never show symptoms if they are transitioned to a low-phenylalanine diet soon after birth.

If your baby is diagnosed with PKU, she will need to maintain a low-phenylalanine diet for life. If she were to stop controlling her dietary intake of phenylalanine, changes in the brain would occur, even well into adulthood. Women who have PKU and wish to become pregnant need to be on a very well controlled diet in order to protect their baby during pregnancy.

If you have any questions about this topic or other pregnancy and newborn health issues, please email the Pregnancy and Newborn Health Education Center at askus@marchofdimes.org.

Special moms need special care

23
Jul
Posted by Barbara

two women meditatingA new study published in Pediatrics shows that groups led by other moms reduced stress in mothers of children with disabilities. It helped to improve “maternal well-being and long-term caregiving for children with complex developmental, physical, and behavioral needs.” These support groups were uniquely focused on learning specialized techniques to reduce stress.

Mothers of children with developmental disabilities experience stress, anxiety and depression more often and to a greater degree than mothers who parent children without disabilities. It is thought that the chronic stress and the associated poor health that often result may impact a mom’s ability to parent effectively.

This study looked at what would happen if a program were put in place specifically for moms of children with disabilities (or what I will call “Special Moms”).  Researchers randomly assigned 243 Special Moms into two groups to attend a program led by peer mentors (eg. other Special Moms who received training to lead the groups).

One group learned Mindfulness-Based Stress Reduction (MBSR) techniques while the other group learned Positive Adult Development (PAD) techniques. MBSR and PAD are evidence-based practices, which mean that they have been shown, through research, to be beneficial.

The MBSR group learned meditation, breathing and movement techniques and the relaxation response. The PAD group learned ways to “temper emotions such as guilt, conflict, worry and pessimism by identifying and recruiting character strengths and virtues…and by exercises involving gratitude, forgiveness, grace and optimism.” All the moms attended weekly group sessions and practiced what they learned at home on a daily basis.

What were the results?

According to the study, the moms in both groups experienced less stress, anxiety and depression, and improved sleep and life satisfaction.  After 6 months, these improvements continued. There were some differences between the two groups that related to whether they received the MBSR or PAD practice, but the important take-away from this study is that both treatments proved beneficial to the moms.

There are programs in place to help children with disabilities, but few programs exist to help their parents, especially when the stress causes mental, emotional and physical fatigue. Moms often become anxious or depressed, which does not help them as they face the intense daily challenges of parenting a child with a disability. This study shows the positive effect of proven stress reduction techniques when taught in a peer-mentored program.

The authors conclude that “future studies should be done on how trained mentors and professionals can address the mental health needs of mothers of children with developmental disabilities since doing so can improve maternal well-being and long-term caregiving for children with complex needs.”

Bottom line

If you are a Special Mom, your personal take-away message from this study is to try to include a stress reduction program into your daily life, such as meditation, yoga, or another relaxation technique. If you can do so with a group of other Special Moms, all the better!

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 and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input.

Cleft and craniofacial awareness and prevention month

21
Jul
Posted by Lauren

July is cleft and craniofacial awareness and prevention month. Craniofacial abnormalities are  defects of the head (cranio) and face (facial) that are present when a baby is born. Cleft lip and/or cleft palate are a couple of the most common abnormalities.

Craniofacial abnormalities can range from mild to severe. These defects can present a variety of problems including eating and speech difficulties, ear infections and misaligned teeth, physical learning, developmental, or social challenges, or a mix of these issues. However, there are steps you can take to help prevent cleft and craniofacial defects before your baby is born.

What increases the risk of having a baby with craniofacial abnormalities?

We’re not sure what causes these defects. Some possible causes are:

• Changes in your baby’s genes. Genes are part of your baby’s cells that store instructions for the way the body grows and works. They provide the basic plan for how your baby develops. Genes are passed from parents to children.

• Diabetes. Women who have diabetes before they get pregnant have a higher risk of having a baby with a cleft or craniofacial birth defect.

• Maternal thyroid disease. Women who have maternal thyroid disease or are treated for the disease while they are pregnant have been shown to have a higher risk of having a baby with an abnormality.

• Not getting enough folic acid before pregnancy. Folic acid is a vitamin that can help protect your baby from birth defects of the brain and spine called neural tube defects. It also may reduce the risk of oral clefts by about 25 percent.

• Taking certain medicines, like anti-seizure medicine, during pregnancy.

• Smoking during pregnancy.

• Drinking alcohol during pregnancy.

• Having certain infections during pregnancy.

How can you prevent cleft and craniofacial defects?

There are steps you can take to decrease the chance of having a baby with cleft and craniofacial defects.

• Before pregnancy, get a preconception checkup. This is a medical checkup to help make sure you are healthy before you get pregnant.

• Take a multivitamin that contains folic acid. Take one with 400 micrograms of folic acid before pregnancy, but increase to one with 600 micrograms of folic acid during pregnancy. Your provider may want you to take more – be sure to discuss this with him.

• Talk to your provider to make sure any medicine you take is safe during pregnancy. Your provider may want to switch you to a different medicine that is safer during pregnancy.

• Don’t smoke.

• Don’t drink alcohol.

• Get early and regular prenatal care.

If you have any question about cleft or craniofacial defects, causes or prevention, read more here or email us at Askus@marchofdimes.com.