Family Team News

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Monday, September 1, 2014

Preemies and hearing loss

Nearly 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:




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.

 
Tags: deaf, early intervention, hearing aids, hearing loss, impairment, language, newborn screening, preemies, prematurity, speech, speech therapy, very low birth weight

Wednesday, August 27, 2014

The do’s and don’ts of bottle-feeding

We 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

Monday, August 25, 2014

Breastfeeding a baby with a cleft lip/palate

A 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.

 

Wednesday, August 20, 2014

Phenylketonuria (PKU)

Phenylketonuria (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.

Monday, August 18, 2014

Special moms need special care

A 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.

Monday, August 11, 2014

Golf for Babies 2014 - Central Maryland

Monday, September 15, 2014
Time:
12:00 PM
Registration Time:
11:00 AM
Hillendale Country Club
13700 Blenheim Rd.
North Phoenix, MD 21131

Join us in our seventh year as we present the March of Dimes Golf for Babies. This year’s event will take place in Northern Baltimore County at Hillendale Country Club, which has been rated as one of the most challenging golf courses in Greater Baltimore. Hillendale’s private golf course is known as a "traditional gem" with its rolling hills and small, undulating, well-bunkered greens. Golfers will enjoy 18 holes of golf, lunch, dinner, prizes and awards, among more than 100 Baltimore area community and business leaders.

Sponsorship opportunities are available. For more information, contact Heather Lynch at hlynch@marchofdimes.com, 410-752-8179

Friday, August 8, 2014

The Great Grape Race Series

Date: Start: Sunday, September 14, 2014 @ 11:00 AM (EDT)

Address: Maryland multiple locations Frederick, MD 21701

Registration Closing Date: Sunday, November 2, 2014 @ 12:00 PM

Organizer's Website: http://www.marchofdimes.com/marylandmetrodc

Click Here To Register




The March of Dimes in partnership with Elk Run Vineyards, Detour Vineyard & Winery, and Distillery Lane Ciderworks are hosting a Vineyard Run and Wine Tasting Series.

                        
The race series will take place across the beautiful vineyards at Elk Run Vineyards (September 14th) in Mt. Airy, Maryland, Distillery Lane Ciderworks (October 26th) in Burkittsville, and Detour Vineyard & Winery (November 2nd) in Keymar, MD.

Each event will be followed by a ‘Happy Hour’ party featuring live music, wine or cider tastings (with an alternative for the younger crowd), prizes by age group and overall winners, and raffle prizes.  Proceeds from the events will fund vital research, grants, education, and advocacy to further the March of Dimes’ mission to improve infant health by preventing premature birth, birth defects, and infant mortality.

Register for 1, 2 or all 3 events at active.com, or download the registration form and mail in with payment.

Wednesday, August 6, 2014

Everyday tips for dealing with sensory special kids

Many kids with sensory issues struggle with typical everyday activities. Here are suggestions from parents of children with sensory difficulties to help you get through each day in a sensory friendly way.

Some kids find bath time and hair washing to be a stressful experience. For other children, getting dressed in the morning or eating meals can be incredibly challenging. Yet others cringe at hearing typical sounds or noises. Here is what some parents recommend:
 
Tips for bathing

•    Let your child get in the bath when the water temperature feels right to him. He may need to stand in it a while before sitting down, in order to adjust to the feel of the water on his skin.
•    During hair shampooing, use a little pail or plastic bucket to rinse hair instead of using the shower nozzle. Water coming from a shower nozzle can be too direct and forceful.
•    When your child is old enough, allow him to rinse his own hair. Being in control of the pail and the water on his own head is less shocking to him than when someone else pours water on his head.
•    Use a facecloth to cover his face if water on the face will cause distress. Then allow your child to wipe his own face with a damp facecloth.
•    Use distractions in the bath, such as bath foam or toys, to make bath time more appealing.
•    Let your child decide if showering is preferable to bathing (when he is old enough).
Tips for dressing

•    Remove tags from clothing before wearing.
•    Let your child decide what kinds of clothes feel good on his skin. Usually brushed flannel or soft cotton or acrylic fabrics work well, but your child will know.
•    If your child hates getting dressed in the morning (due to the sensory changes), dress your child the night before in the clothes he will wear the next day. In other words, let him wear his clean clothes to bed. He may look a tad more wrinkled in the morning, but he will get his day off in a sensory calm way.
•    When you find a pair of pants, a shirt or outfit that your child loves (i.e. it “feels right”), buy two of them. This way, one can be laundered when the other one is being worn. Or, buy them in different colors if possible. Comfort- not fashion -is key here.
Tips for eating

•    As much as possible, have healthy choices available. If you know your child loves chicken with pasta, then make a double portion. This way you can feed it to him another night in the same week, even if the rest of the family is eating something different. This allows you to eat together as a family and yet you did not cook two meals in one evening.
•    Freeze individual portions for meals on the fly, for the babysitter to serve to him, or when the family meal is sure to be too hard for your child to swallow (literally).
•    Ask your child’s pediatrician or consult with a Registered Dietician who is familiar with sensory issues to learn other ways of getting your child to eat a healthy diet. Perhaps mixing vitamin powder into your child’s food (such as spaghetti sauce) or offering protein shakes will substitute nutrients that your child may be missing.
Tips for sound sensitivity

•    Prepare your child for events that may be uncomfortable, such as large assemblies with people clapping, musical events, a meal in a big restaurant, birthday parties, etc. Soft ear plugs are often helpful to use at these events so keep them handy. Other children prefer noise-cancelling headphones.
•    Once home, provide a quiet environment so your child’s ears can rest.
Learn more

These are just a few tips for getting through a day in a sensory successful way. See my prior posts: Sensory difficulties in children to learn more about the different kinds of sensory problems that exist, and Help for sensory issues to learn about different treatments. Ask your child’s pediatrician if a treatment such as Sensory Integration Therapy (a form of Occupational Therapy) may be helpful. You can also discuss other treatments which are available.
Feel free to share what has worked for you and your child. We’d love to hear from you!

If you have questions, or would like more information, please write to us at AskUs@marchofdimes.com.
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.

Monday, August 4, 2014

Bikers for Babies 2014


Sunday, October 05, 2014
Time: 2:00 PM
Registration Time: 11:00 AM
Maryland International Raceway
27861 Budds Creek Rd.
Mechanicsville, MD 20659

What if the hardest day of your life… was your first? The 11th Annual Maryland Bikers for Babies includes entry into MIRock and a chance to see an amazing 5-second, 240 mph Top Fuel match race with Larry “Spiderman” McBride taking on Dave Vantine! Come early and enjoy the festive atmosphere, music, vendors, auction, raffles, register for the tattoo contest and/or bike show.

Click to REGISTER! The 45-mile police escorted ride will begin at 2:00 with official line-up and start on the ¼ mile-racing track and will take you on a scenic ride through beautiful Southern Maryland when the fall foliage is at its peak. The ride will end at the Charles County Fairgrounds in La Plata, Maryland for a free after ride party with all the trimmings courtesy of the Waldorf Lions Club and includes live entertainment by the Franklin Square Band! The after ride party is a family friendly event with vendors, auction, raffles, games, moon bounce and activities from 3:00 – 7:00 p.m. You can also register your family and have them meet you at the after party! 

All clubs and all wheels welcome! Don’t ride?  Bike in the shop?  Register anyway and enjoy all the festivities and fundraising benefits. Online pre-registration is only $30! Day-of registration is $35. Spectator/child (12 and under; will not ride) $10.

Join our Facebook Group or our Facebook Event

Everybody is affected by prematurity – families, businesses, schools, health professionals and the nation as a whole. We RIDE to fulfill the March of Dimes Mission to improve the health of all babies by preventing premature birth, birth defects and infant mortality. Help us give every baby a healthy, happy “birth” day.

Be a $100 Hero!

1 out of 9 babies is born premature

1 + 9 = 10

Find 10 friends to donate $10 dollars

$100 = Ride, Lunch, Pin and T-shirt

*All licenses will be checked for motorcycle endorsement  

Wednesday, July 30, 2014

Group B strep infection


Between 35-37 weeks of your pregnancy your prenatal care provider will test you for Group B strep. Group B streptococcus (also called Group B strep or GBS) is a common type of bacteria that can cause infection.

Many people carry Group B strep—in fact about 25% of pregnant women are carriers.  GBS bacteria naturally live in the intestines and the urinary and genital tracts. It is not known how GBS is transmitted in adults but you can’t get it from food, water, or things you touch. An adult can’t catch it from another person or from having sex, either.  Most people do not even know they are carriers since adults usually show no signs or symptoms related to GBS.

GBS, however, can be passed to your newborn during labor and delivery and it can make your baby very sick. Babies with a GBS infection may have one or more of these illnesses:

• Meningitis, an infection of the fluid and lining around the brain

• Pneumonia, a lung infection

• Sepsis, a blood infection

According to the CDC, in the US, group B strep is the leading cause of meningitis and sepsis in a newborn’s first week of life.

There are two kinds of GBS infections:

1. Early-onset GBS: Signs like fever, trouble breathing and drowsiness start during the first 7 days of life, usually on the first day. Early-onset GBS can cause pneumonia, sepsis or meningitis. About half of all GBS infections in newborns are early-onset.

2. Late-onset GBS: Signs like coughing or congestion, trouble eating, fever, drowsiness or seizures usually start when your baby is between 7 days and 3 months old. Late-onset GBS can cause sepsis or meningitis.

The good news is that early-onset GBS infection in newborns can be prevented by a simple test. During your third trimester, your provider will take a swab of the vagina and rectum. Results are available in a day or so. This test will need to be done in each pregnancy.

If you do have GBS, then your provider will give you an antibiotic through an IV (medicine given through a tube directly into your bloodstream) during labor and delivery. Usually this is penicillin (if you are allergic to penicillin, there are other options available). Any pregnant woman who had a baby with group B strep disease in the past, or who has had a bladder (urinary tract) infection during this pregnancy caused by group B strep should also receive antibiotics during labor.

Unfortunately late-onset GBS cannot be prevented with IV antibiotics. Late-onset GBS may be due to the mother passing the bacteria to her newborn, but it may also come from another source, which is often unknown.

Treatment for babies infected with either early-onset GBS or late-onset GBS is antibiotics through an IV.

Currently researchers are testing vaccines that will help to prevent GBS infections in both mothers and their babies.

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.