Newborn screening: a personal story

04
Sep
Posted by Sara

All babies in the United States get newborn screening before they leave the hospital. Newborn screening looks for rare but serious and mostly treatable health disorders. Babies with these disorders often look healthy. But if the condition is not diagnosed and treated early, a baby can develop lasting physical problems or intellectual disabilities, or may even die.

The federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recently voted to recommend adding X-linked adrenoleukodystrophy (X-ALD) to the Recommended Uniform Screening Panel (RUSP).  This recommendation now needs to go to the Secretary of Health and Human Services for her review and consideration.

X-ALD is a genetic disorder that occurs mostly in boys. In this disorder, the fatty covering (myelin) that insulates nerves in the brain and spinal cord is broken down. This reduces the ability of the nerves to relay information to the brain. X-ALD can cause serious and permanent disability or death.  The only effective treatment is early identification by newborn screening, and stem cell therapy (bone marrow or cord blood transplantation), sometimes along with other life-saving treatments.

X-ALD is due to a gene change, or mutation, on the X chromosome. The X and Y chromosomes are responsible for gender. Girls have two X chromosomes (XX). They inherit one from their mom and one from their dad. Boys have an X and a Y chromosome (XY). They inherit the X from their mom and the Y from their dad. Since boys have only one copy of the X chromosome, they will have only one copy of the X-ALD gene mutation, and they will develop X-ALD. Because girls have two copies of the X chromosome, they will only have one copy of the gene mutation (inherited from their mom). A single copy of the altered gene usually does not cause any symptoms of X-ALD. Although some girls can have health problems associated with the condition, they are often mild and usually appear at a later age.

X-ALD has not been officially added to the Recommended Uniform Screening Panel. We will keep you updated. In the meantime, here is a very personal story about newborn screening and why it is so important:

 

 

Vocabulary at age 2 may predict kindergarten success

02
Sep
Posted by Barbara

parents reading to toddlerThe size of a child’s vocabulary at age two may predict how well he will do in kindergarten, according to a new study. The larger the oral vocabulary, the better prepared he will be for school.

The study looked at 8,500 children in the United States. The researchers found that:

  • preemies or babies with a very low birth weight, and babies whose mothers had health issues had smaller vocabularies.
  • children with parents who frequently interacted with their children and read to them on a regular basis had larger vocabularies.
  • girls tended to have a larger vocabulary than boys.
  • children from higher socioeconomic homes had larger vocabularies.
  • children with larger vocabularies at 24 months of age did better in reading and math and had fewer behavioral problems.

The researchers believe that interventions should be started early enough so that children who are at risk due to medical/health problems or socioeconomic disadvantages, have the time to develop and catch up. Interventions need to be targeted especially to toddlers who are living in disadvantaged homes.

Keep in mind that no two children develop exactly alike. Some are early bloomers while others are later bloomers. And one study cannot predict an individual child’s development.

What can you do?

The single most effective way to help your baby expand his vocabulary is to read to him. Start when your baby is born, and read every day. Reading aloud helps promote language skills – vocabulary, speech and later on, reading comprehension. See this post to learn just how important reading is for your baby and to learn where to get books. See the AAP’s article for tips on how to make it fun. And remember, the best parts about reading to your little one are the snuggles and cuddles that go along with it.

If your baby is showing signs of a developmental delay, speak with his health care provider, or contact your Early Intervention Program and ask for a free screening. If your child qualifies, he may receive personal, targeted intervention (such as speech therapy) to help him catch up.

Don’t delay with delays!

Have questions? Text or email them to AskUs@marchofdimes.org.

The study appeared in the journal Child Development.

Learn how to help your child in our Delays and Disabilities series.

Benefits of breastfeeding

31
Aug
Posted by Lauren

sg_breastfeeding1Breast milk is the best food for your baby during the first year of life and we recommend exclusively breastfeeding for about the first six months. Your milk helps your baby grow healthy and strong and can protect him from many illnesses. How does your breast milk do this?

Breast milk…

• has hormones and the right amount of protein, sugar, fat and most vitamins to help your baby grow and develop.
• has antibodies that help protect your baby from many illnesses. Antibodies are cells in the body that fight off infection.
• has fatty acids, like DHA (docosahexanoic acid), which help support your baby’s brain and eye development. It may lower the chances of sudden infant death syndrome, also known as SIDS, too (SIDS is the unexplained death of a baby younger than 1 year old).
• is easy to digest. A breastfed baby may have less gas and belly pain than a baby who is fed formula.
• changes as your baby grows so he gets exactly what he needs at the right time. For example, for the first few days after giving birth, your breasts make a thick, yellowish form of breast milk called colostrum. Colostrum has nutrients and antibodies that your baby needs in the first few days of life. It changes to breast milk in 3 to 4 days.
• is always ready when your baby wants to eat. Your body makes as much breast milk as your baby needs. The more your baby breastfeeds, the more milk your body makes.

What if you are sick? Should you still breastfeed?

In most cases, yes, you should continue to breastfeed. The antibodies your body produces to fight off an illness will be passed to your baby through your milk and protect him. If you stop breastfeeding when you are sick, you will reduce your baby’s protection and even increase his chance of getting sick. If you feel a cold coming on, rest, drink plenty of fluids and keep on breastfeeding. If you are uncertain about whether to breastfeed while sick, ask your Lactation Consultant or baby’s pediatrician.

Read our blog to learn how to keep your breast milk safe and other helpful posts in Breastfeeding 101.

Have questions? Text or email us at AskUS@marchofdimes.org. We are here for you.

March of Dimes remembers helping families during Hurricane Katrina

28
Aug
Posted by Barbara

A guest post by Capi Landreneau, Director, Mobile Health Care for March of Dimes and former Director of Program Services for the Louisiana Chapter.

Mobile UnitToday, we acknowledge the 10-year anniversary of Hurricane Katrina, a storm with devastating effects that left many without adequate care in so many ways. In the days immediately following landfall, March of Dimes volunteers and staff members were on the ground supporting families, mothers and infants.

We visited shelters in search of pregnant women and mothers in need, we convened community partners to see how we could work together in such a difficult time, we communicated with the national office advising them of the day to day needs and changes in the landscape from safety, to transportation to food shortages. Other staff traveled from New York to Louisiana to assist and slept on the floors of local staff member’s homes, in some cases having never met before.

The outpouring of support from our volunteers around the nation was incredible. Volunteers around the country gathered in groups and assembled care kits for new moms that were evacuated from hospitals. Each kit was personally assembled with comfort items, baby supplies and a handwritten note signed lovingly by a mom from another state — not a friend or family member, but a stranger who just wanted to provide comfort and care in a time when so many felt helpless.

The Louisiana March of Dimes office was literally taken over by donations and hurricane relief work. We had never done anything like that before but we also had never experienced an event like Hurricane Katrina. We distributed donated diapers and formula, we helped families with infants find shelter in places suitable for young families.

General shelters weren’t appropriate for small children running around and women’s shelters didn’t allow husbands. I remember well one family that had twin infants that couldn’t have been more than a month old. They were born prematurely and I remember our concern for their still fragile immune systems in a large shelter. We pooled contacts and several entities came together to support a family specific shelter. I will never forget the look on the mother’s face when we brought her to the shelter that was safe for her toddler to run around, safe for her preemie twins and also allowed her husband to remain with the family. It was only one family on that day, but it felt like we changed the world.

We have a very specific mission – moms and babies. A hospital or other agency would call and we would be tasked to brainstorm options, identify placement for women with infants and/or fill needs that no other agency was addressing. At that time there were no preparations for infants in a massive shelter where water wasn’t safe or abundant. We rallied the volunteers and arranged for single serve (no fridge for storage), ready to feed (no water), disposable (no place to sanitize) formula. We aided hundreds of infants and pregnant women and their families.

As weeks passed and recovery work continued, March of Dimes received a call directly from one of our longtime supporters in New Orleans, who expressed a clear need for “bricks and mortar.” Providers were ready but locations for provision of services were scarce due to the devastation and flooding throughout the area.

March of Dimes established The Hurricane Assistance Fund and raised over $5 million to support recovery efforts. The funding allowed for the design and purchase of four vehicles tailored specifically for provision of care of women and infants along with operational funding for several years.

In September of 2006, the first Mom & Baby Mobile Health Center was launched. The mobile health clinic was equipped to provide full prenatal care onsite without any need for land based support. It served moms and babies in New Orleans during the difficult years following the devastation incurred after Hurricane Katrina made landfall. The mobile clinic relocated regularly in the years following launch as areas began to revive and residents returned to their homes. This allowed the health center to go where the women were in greatest need.

Our second program launched on the Mississippi gulf coast. Serving moms and babies was critical as providers returned to flooded clinics and buildings swept off their foundations by storm surge. The Mom & Baby Mobile Health Center partnered with K-mart, one of our long standing supporters, to provide access to care in their store parking lots. Two additional locations were launched in Louisiana, Lake Charles and a second program in New Orleans to meet the increasing need as residents returned to the city. Since the program was launched, Mom & Baby Mobile Health Centers has provided over 35,000 care encounters to women and infants in Louisiana and Mississippi.

Like so many people living in or touched by Louisiana, I have many emotions today, but what I will focus on will be the incredible outpouring of love and support that we received from strangers all committed to a common cause – healthy moms and babies. I’ll verbalize once again the joy, pride and satisfaction that I feel each time I am reminded that I work for an organization that did what needed to be done in such an outstanding way with such amazing and selfless staff and volunteers. I’m so glad I have the privilege of working for March of Dimes for 11 years, the last 9 of which I’ve spent working with the Mom & Baby Mobile Health Centers. They are a wonderful legacy of March of Dimes’ commitment to support Louisiana and Mississippi in their recovery after Hurricane Katrina.

Thank you, March of Dimes and thank you volunteers — YOU made a difference then and you continue to make a difference NOW. On behalf of Louisiana mothers and infants – we are forever grateful for your generosity and care.IMG_7274

Kids with special needs head back to school

26
Aug
Posted by Barbara

school-bus-and-stationeryThe start of school is an exciting time for most children and their parents. Many children with special needs eagerly anticipate the start of a new school year. But lots of kids are incredibly anxious at the thought of all the unknowns: new classroom, teacher, friends or school.

If you are the parent of a child with special needs, how are you feeling about the start of the new school year?

Are you…

Scared or fearful – Will your child’s particular needs be met?

Afraid – How will your child react to new smells, lights, sounds and routines?

Overwhelmed – Is your child going to a new school? Are you wondering whether he will be able to handle the transition?

Unprepared – Do IEP meetings make you feel like you don’t know what you are doing?

Alone – Do you feel like you are the only parent with your concerns?

Worried – Is your child going to do well in a class with “typically developing” peers?

Insecure – Are you wondering when to swoop in and help your child versus sitting back and watching him and the school handle any hiccups or problems?

Nervous – Will your child make friends? Will he be by himself on the playground?

If you are experiencing any or all of the above emotions, you are not alone. There is no doubt that starting a new school year is hard on students AND parents. But, when you mix in the complications of dealing with a disability and the necessary accommodations or supports that need to be in place in order for your child to succeed, it can be very stressful!

This blog series, and all of the resources listed in each post will help you tackle whatever comes your way. By being prepared, you will calm your nerves. Hopefully, you will become excited, confident and in-control. Your little one will sense your positive outlook and enthusiasm, and it will rub off on him, too.

Check out these tips to smooth the back to school transition for your child. Learn helpful ways to make the transition from summer to school do-able and realistic, including changing bedtime hours, adjusting meds and meeting your child’s teacher.

Please share your feelings about the new school year – good, bad, up, down, and anything in between. Got any tips? Let’s hear them. We all learn from each other.

 

Have questions?  Text or email them to AskUs@marchofdimes.org. We are here to help.

A woman’s microbiome may influence her chance of giving birth early

25
Aug
Posted by Sara

research_birthdefectsresearch_rdax_50Last week, the March of Dimes announced that investigators from the Stanford Prematurity Research Center published an important study which may help to better understand some of the factors that may play a role in premature birth.

Researchers at Stanford have been looking into how the microbiomes of women who deliver babies early are different from those who have full-term births. The microbiome is a community of microorganisms (such as bacteria) in the body. Differences in the microbiomes of individuals may help explain why some women give birth early. Microbiome differences may also explain other health issues, such as asthma and inflammatory bowel disease.

Weekly samples were taken of the bacteria from the teeth, gums, saliva, reproductive tract, and stool from 49 pregnant women. Scientists found little change in the bacterial communities in each woman, week to week at each location. But they did find that microbial communities in the reproductive tracts of women who delivered their babies too soon were different from those of women who delivered full term. Those differences were identified early in the pregnancies and continued throughout the pregnancies.

“These findings may help us screen women and identify and predict those who are more likely to have a baby born too soon,” said David Relman, MD, a professor of microbiology, immunology, and of medicine at the Stanford University School of Medicine and the lead investigator for the research center on this project.

The researchers also found that the women’s microbiomes changed immediately after they delivered their babies, and did not revert back to pre-pregnancy patterns in some cases until at least a year later. “This might explain why women with closely spaced pregnancies have a higher risk of preterm birth,” said Dr. Relman.

The March of Dimes currently has five prematurity research centers. These unique, transdisciplinary centers bring together scientists from many diverse disciplines — geneticists, molecular biologists, epidemiologists, engineers, computer scientists, and others — to work together to find answers to prevent premature birth.

Questions? Text or email them to AskUs@marchofdimes.org.

Keeping track of feedings and diapers

24
Aug
Posted by Lauren

Mom breastfeeding (2)Did you know the March of Dimes developed a breastfeeding log just for busy moms? We hope it will make it just a little easier to see if your baby is getting what he needs to grow and thrive.

Being a new mom can be tough. You have so many things to think about and remember while caring for your little one, such as which breast your baby last ate from or how many wet or soiled diapers he had today. But it is important to keep track of this information to make sure your baby is eating well and gaining enough weight.

The breastfeeding log can be used to track:

• Day and times of your baby’s feedings
• How long your baby feeds from each breast
• Which breast you started nursing from at each feeding (so you can begin the next feeding from the other breast).
• How much breast milk you pump
• Number of wet diapers or bowel movements per day
• Breastfeeding problems or concerns

Our breastfeeding log is especially helpful if your baby is in the NICU. You can track how often and how much milk you express. Many moms struggle to make breast milk when their babies are sick and it may take a few days of pumping before you produce enough milk. If you have trouble making enough breast milk, ask for help and support. A lactation consultant can use the information in your log to make sure you’re on the right track.

To ensure your baby is gaining enough weight, bring your log to each of your baby’s visits with his health care provider. If your baby is slow to gain weight, the breastfeeding log can help you and your baby’s provider spot and take care of feeding issues before they become a problem.

See other breastfeeding posts here.

Have questions? Text or email us at AskUS@marchofdimes.org. We are here to help.

Thalidomide and Dr. Frances Kelsey

21
Aug
Posted by Barbara

Dr. Frances Kelsey & President KennedyThere aren’t many people who can singlehandedly claim that they prevented thousands of children from being born with serious birth defects. Yet, Dr. Frances Oldham Kelsey is one woman who is famous for that reason.

You may have heard of thalidomide. It is a drug that is used to treat a skin disease caused by leprosy, but in the 1950’s and 60’s it was given to pregnant women to lessen morning sickness. Unfortunately, thalidomide caused serious limb (arms and legs) defects in thousands of children around the world. But, due to the vigilance of Dr. Kelsey, medical officer at the FDA (Food and Drug Administration) thalidomide was never allowed to be licensed in the U.S.

On August 7th, Frances Oldham Kelsey, MD, PhD, passed away at the age of 101. She was a wife, mother, and a highly educated woman. She earned a doctorate degree (PhD) in pharmacology and was one of seven women in her class of 100 to graduate from the University of Chicago Medical School in 1950. She joined the FDA in 1960.

In her autobiography, she writes “I had been hired as a medical officer and this meant that I would review the medical part rather than the pharmacology of new drug applications.” Despite considerable pressure to allow thalidomide to be available in the U.S., Dr. Kelsey followed her instinct (aided by her excellent education and training) to not allow the drug to be licensed. She says it was particularly important to investigate this drug because “When you give a drug to a pregnant woman you are exposing, in fact, two people to the drug, the mother and the child.” Dr. Kelsey felt that until it was established that the drug was safe for pregnant women, it should not be given to them. “Our objections… were really on theoretical grounds, largely based on the fact that there was no evidence that it was safe. Until we had such evidence we had to question the safety.”

Dr. Kelsey recalls that this near-miss disaster “caught the eye of the persons who were pressing for drug reform… In next to no time, the fighting over the new drug laws that had been going on for five or six years suddenly melted away, and the 1962 amendments were passed almost immediately, and unanimously.”

Later, an important amendment to the law provided that patients must know about and consent to taking a new, unapproved drug in a clinical trial – a very important aspect in drug testing that continues to this day.

Dr. Kelsey notes that “Nowadays we know exactly what is being tested and who is testing it and we get results back as soon as possible. Then if we get reported adverse reactions, we may stop the studies…”

Dr. Kelsey received the President’s Award for Distinguished Federal Civilian Service in August 1962, from President John F. Kennedy. She received numerous other awards, commendations and honorary degrees. According to the FDA, “in October 2000 Dr. Kelsey was inducted into the National Women’s Hall of Fame, and in 2010 Commissioner Hamburg conferred the first Dr. Frances O. Kelsey Award for Excellence and Courage in Protecting Public Health on Dr. Kelsey herself.”

We are grateful for Dr. Kelsey’s vigilance and tireless efforts in protecting babies, women and all individuals in the United States. Her honorable legacy will never be forgotten.

 

Photo: Courtesy of US National Library of Medicine. Frances O. Kelsey receives the President’s Award for Distinguished Federal Civilian Service from President John F. Kennedy, 1962.

Questions?  Text or email them to AskUs@marchofdimes.org.

 

Car seat recall

20
Aug
Posted by Sara

minivanBritax is recalling over 200,000 child car seats regarding concerns about the harness adjuster buttons.  According to the company’s website “certain ClickTight model convertible car seats may contain a defect with the harness adjuster button, which would pose a safety hazard. The harness adjuster button may remain down in the ‘release’ position after the harness is tightened. This will enable the shoulder harnesses to loosen from a child’s movements while secured in the seat. A loose harness may not adequately protect a child in the event of a motor vehicle crash.”

The voluntary safety recall includes certain Advocate ClickTight, Boulevard ClickTight, and Marathon ClickTight model convertible car seats manufactured between August 1, 2014 – July 29, 2015 with the following US model numbers: E9LT95Q, E9LT95Z, E9LT95N, E1A025Q, E9LT86F, E1A135Q, E9LT86G, E9LT85Q, E9LT86A, E9LT86H, E9LT85S, E1A015Q, E1A016A, E1A016H, E1A166F, E9LT87J, E1A116L, E9LT76P, E9LT71Q, E9LT76N, E9LT76B, E9LT75R, E9LT76L, E1A006B, E1A005R.

Britax is automatically mailing a free remedy kit to all registered owners of the recalled car seats within 7-10 business days of the announcement. The remedy kit includes one (1) non-toxic food-grade lubricant, a label indicating that the remedy has been completed, as well as an instruction sheet for applying the lubricant to the harness adjuster button (red).

Owners can confirm if their product is included in the recall by visiting www.BritaxClickTightConvertibleRecall.com or by verifying the model number and date of manufacture.

Questions? Text or email them to AskUs@marchofdimes.org.

Children with Congenital Heart Defects and Their Use of Special Educational Services

19
Aug
Posted by Barbara

A guest post by Coleen Boyle, PhD, MSHyg
Centers for Disease Control and Prevention

Teacher and studentsSome new research gives us encouraging information showing that children living with birth defects are getting the services they need. Specifically, several of my colleagues and I found that children with congenital heart defects (CHDs) received special education services more often than children without birth defects.

This is important news, because earlier studies have shown us that children with some types of CHDs have a greater chance of having problems with brain development and function as compared to children without birth defects. Knowing that children with CHDs may benefit from—and are receiving—special education services is reassuring. Special education services are those specifically designed to meet the unique needs of a child with a disability.

So what do these findings mean? They demonstrate the importance of developmental screening—short tests usually conducted by a child’s doctor to determine if their basic learning skills are where they should be—for all children with CHDs to ensure they receive the services they need. The American Academy of Pediatrics recommends all children receive these screenings at 9, 18 and 24 or 30 months of age during well visits with the doctor. Screenings may include observing, talking with, or playing with the child to see how he or she plays, speaks, behaves, and moves.

CHDs are heart problems that occur before birth and are the most common type of birth defect in the United States. About 1% or nearly 40,000 births each year are affected by CHDs. Of these, about 1 in 4 is considered a critical CHD, in which surgery or other procedures are needed within the baby’s first year.

Some of the specific findings from the study show that
• Children with CHDs and no other birth defect were 50% more likely to receive special education services than those children without birth defects.
• This increased use of special education services occurred in children with critical CHDs and in children with noncritical CHD.

For this study, we looked at information about children born with a CHD from 1982 to 2004 in metropolitan Atlanta; we also examined a similar sample of newborns without a birth defect. After linking information about these children to special education services they later received (from 1992 to 2012), we determined that children with CHDs more often received those services than children without birth defects.

The Centers for Disease Control and Prevention (CDC) and our partners not only conduct research such as this to identify the scope of the issue and how it is being addressed, we also
• Fund programs and conduct research to help us determine where and when birth defects occur and whom they affect;
• Track CHDs among teens and adults to learn more about their health issues and needs; and
• Collaborate with partners such as the March of Dimes to provide information to families, experts, and organizations to address CHDs.

We at CDC and in particular the National Center on Birth Defects and Developmental Disabilities (NCBDDD) along with our partners, including March of Dimes, strive to help ensure individuals born with these conditions get the care they need throughout their lives.

To learn more read the Key Findings document and the research article abstract.

dr-coleen-boyleThe March of Dimes wishes to thank Dr. Coleen Boyle for this guest post. Dr. Boyle is the Director of NCBDDD and has authored or co-authored more than 100 peer-reviewed and other scientific publications.