World Sickle Cell Day

19
Jun
Posted by Sara

mom and newbornSickle cell disease (also called SCD) is an inherited condition that affects the red blood cells. Red blood cells carry oxygen to the rest of your body. In a healthy person, red blood cells are round and flexible. They flow easily through the body’s blood vessels. However, a person with SCD has red blood cells that are shaped like a sickle (the letter C). These sickle-shaped cells are stiff and can stick to the walls of blood vessels. These sticky cells can cause a blockage that slows or stops blood flow which causes pain, infections and, sometimes, organ damage and strokes.

Sickle cell disease (SCD) affects millions of people throughout the world and is particularly common among people whose ancestors came from Africa, the Caribbean, Central America, Saudi Arabia, India, Turkey, Greece, and Italy. In the U.S., the exact number of people living with SCD is unknown. However, it is estimated that SCD affects 90,000 to 100,000 Americans.

Cause and diagnosis of SCD

SCD is inherited. This means it’s passed from parent to child through genes. To have SCD, you have to inherit a gene change for sickle cell from both parents. If you inherit the gene change from just one parent, you have sickle cell trait. This means that you have the gene change for SCD, but you don’t have SCD. When this happens, you’re called a carrier. A carrier has the gene change but doesn’t have the condition. Sickle cell trait cannot become SCD.

In the United States, testing for SCD is part of newborn screening. This allows babies who have SCD to be identified quickly and treated early. Because children with SCD are at an increased risk of infection and other health problems, early diagnosis and treatment are important.

Complications and treatment of SCD

The complications of SCD are different for each individual. Some children with SCD may be healthy but others may have problems. Pain episodes are one of the most common complications of SCD. They happen when sickle cells block blood flow. Pain can occur in organs and joints and it can last a few hours, a few days or even for weeks. Most children with SCD are pain free between these episodes, but adolescents and adults may have ongoing pain.

Although the body is always making new red blood cells to replace old ones, sickle cells do not live nearly as long as normal red blood cells. So the body has difficulty replacing red blood cells fast enough. A person with SCD doesn’t have enough healthy red blood cells to carry oxygen to the rest of his body. This is called anemia. Treatment depends on your child’s symptoms and may include antibiotics and blood transfusions.

Poor oxygen delivery over a lifetime can also result in damage to organs, such as the spleen, brain, lungs, and eyes.

A few children with SCD have been cured through stem cell transplant. However this is not an option for all people with SCD. In general, treatment options vary and depend on the specific symptoms.

Early diagnosis and regular medical care to prevent complications is very important. If you are thinking about becoming pregnant, you can talk to your health care provider about blood tests to determine if you and your partner are carriers for SCD.

Questions?  Send them to AskUs@marchofdimes.org.

Talking to your child about his medical condition

17
Jun
Posted by Barbara

child in wheelchairParents have written to us asking when they should tell their child that he has a disability, birth defect or chronic medical condition. Not only do they want to know when to tell their child; they want to know HOW to do it.

According to the experts, there is no straight, cookie-cutter answer. Every child is different. Every medical condition is different. Kids mature at varying rates, so one five year old may be capable of understanding details of his condition while another one will not be able to grasp the concepts. According to the AAP, “The type of information you convey to your child should be appropriate for your child’s age and developmental abilities. You can gauge this best by listening to her questions.”

Seeking advice from your child’s pediatric health care provider is always a good place to start, along with other specialists such as a therapist, psychologist, neurologist or developmental pediatrician. The AAP has practical information on how to talk to your child, along with tips on how to help him deal with the daily stress of a childhood disorder.

Just as you probably felt like a steam roller moved over you when you learned of your child’s condition, your child may also feel disappointed, sad or even angry. On the other hand, your child may feel a sense of relief to realize that the condition has a name, he is not the only child who has it, and mom and dad will be there to support him through the ups and downs. Other children may not have much of a reaction, as they already knew what was going on – or felt different – so they are not especially moved by the new information.

Depending on your child’s age, his ability to understand, and what he hears from peers and siblings, he may know more about his condition than you think. And, each year, as he grows and matures, his ability to understand will increase. AAP recommends that “Every year or so, someone should check out what the child understands about his illness or disability, fill in the gaps and correct information that he does not understand correctly.”

Children’s books on the topic of his disability can help your child understand what is happening in his world. Likewise, meeting other children who share his condition may help to put it in perspective and brighten his outlook. He may even make a new friend or two.

Remember to focus on what your child CAN do, as opposed to his struggles. This attitude is key in keeping him focused on the positive. Help him find his passion  and celebrate his resilience.

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

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

 

Our fifth prematurity research center has launched!

15
Jun
Posted by Lauren

AA010686The new collaborative, which launched earlier this month includes the University of Chicago, Northwestern University Feinberg School of Medicine, and Duke University School of Medicine. The researchers will work to identify genes that help to make sure a woman has a full-term pregnancy. They are also looking at how stress, including how a woman’s lifelong exposure to discrimination or poverty, may influence those genes.

The March of Dimes has invested a total of $75 million over 10 years towards five research centers. Each center will focus on different aspects of the causes of preterm birth in the hopes of preventing women from going into labor too early. Babies born too early can face serious long-term health problems.

Our first center opened at Stanford University School of Medicine in California in 2011, followed by the Ohio Collaborative, a partnership of universities in Cincinnati, Columbus and Cleveland, Ohio, which launched in 2013. In November of last year we launched our third and fourth centers at Washington University, St. Louis Children’s Hospital in Missouri and at the University of Pennsylvania respectively.

All five of our prematurity research centers will work together and share findings to determine the cause of preterm birth so that more babies can have a healthy start. Learn more about our newest research collaborative here.

Rotavirus vaccine drastically reduces childhood hospitalizations

12
Jun
Posted by Sara

tired-toddlerA colleague was recently telling us about the time her 18 month old daughter was hospitalized for two days due to severe dehydration. She had been experiencing diarrhea and vomiting for a few days and it unfortunately progressed to the point where she needed medical intervention. Her illness was caused by rotavirus. Fortunately since 2006 a vaccine has been available that prevents rotavirus and new research shows how effective the vaccine has been at reducing hospitalizations.

According to the American Academy of Pediatrics, every year prior to the rotavirus vaccine being available:
• More than 400,000 young children had to see a doctor for illness caused by rotavirus,
• More than 200,000 had to go to the emergency room,
• 55,000 to 70,000 had to be hospitalized, and
• 20 to 60 died.

A study that was recently published shows that since the vaccine has been available, there has been a significant drop in the number of young children hospitalized with diarrhea, vomiting, and dehydration. After vaccination began, hospitalization rates for rotavirus fell by 70 percent in 2008, 63 percent in 2009, 90 percent in 2010 and 94 percent in 2012.

While the vaccine protects individual children from getting rotavirus, herd immunity also plays an important role. According to the study’s researchers, “Herd immunity occurs when a child’s chance of coming into contact with a germ drops because so many other people are also immune to the bug, and are therefore not passing it on.” Since infants are routinely vaccinated against rotavirus, the virus is no longer as common as it once was. As a result, children who cannot be vaccinated because of allergies or underlying medical conditions are protected from getting the virus as well.

The rotavirus vaccine is given in either two or three doses at 2, 4, and 6 months (if necessary) of age. Your baby should get the first dose of rotavirus vaccine before 15 weeks of age, and the last by age 8 months. Although the vaccine prevents diarrhea associated with rotavirus, it will not prevent diarrhea or vomiting caused by other germs. So proper hand-washing is still important.

Questions?  Send them to AskUs@marchofdimes.org.

Shingles, kids and pregnant women – know the facts

10
Jun
Posted by Barbara

Many pregnant women have written to us expressing concern about being exposed to a family member who has shingles. Usually it is their parent or grandparent, or another older adult who has the virus. However, did you know that children can get shingles, too?

When my daughter was in fourth grade, she came home from school with a tiny rash on her back about the size of a quarter, complaining of pain and exhaustion. I had never seen a rash like that before; it was a little clump of tiny bumps. Sure enough, her pediatrician diagnosed it as shingles. I was shocked, as I never associated shingles with kids. Although it isn’t common, it does happen, and the risk of getting singles increases with age. My daughter had a mild case, and after about 2 weeks she was on the mend. She was lucky – it can be very painful and last longer.

What causes shingles?

Shingles (formally known as Herpes Zoster) is caused by the Varicella Zoster virus, the same virus that causes chickenpox. Only someone who has had chickenpox – or, rarely, has gotten the chickenpox vaccine – can get shingles, according to the CDC. The chickenpox virus stays in your body and can re-appear at a later date, often many years later. When it reappears, it does not return as chickenpox – it comes back as shingles.

How common is shingles?

My daughter had chickenpox (the disease) when she was four years old. At that time, the vaccine was not yet available. It is far less common to develop shingles if your child has had the chickenpox vaccine. By vaccinating your child against chickenpox you will decrease her chances of getting shingles later in life.

At least 1 million people a year in the United States get shingles. Shingles is far more common in people 50 years of age and older. It also occurs more in people whose immune systems are weakened because of a disease such as cancer, or drugs such as steroids or chemotherapy.

Can you catch shingles from someone who has shingles?

No, you can’t catch shingles from another person who has shingles. However, a person who has never had chickenpox (or the chickenpox vaccine) could get chickenpox from someone with shingles. However, this is not very common. Shingles is not spread through the air and infection can only occur after direct contact with the rash when it is in the blister-phase. A person with shingles is not contagious before the blisters appear or after they scab over.

If you are pregnant or trying to get pregnant…

• First, get a blood test to find out if you’re immune to chickenpox. If you’re not immune, you can get a vaccine. It’s best to wait 1 month after the vaccine before getting pregnant.

• If you’re already pregnant, don’t get the vaccine until after you give birth. In the meantime, avoid contact with anyone who has chickenpox or shingles.

• If you’re not immune to chickenpox and you come into contact with someone who has it, tell your provider right away. Your provider can treat you with medicine that has chickenpox antibodies. It’s important to get treatment within 4 days after you’ve come into contact with chickenpox to help prevent the infection or make it less serious.

• Tell your provider if you come in contact with a person who has shingles. Your provider may want to treat you with an antiviral medication.

What does all this mean for your child?

• If you think your child may have shingles, contact her health care provider. Prompt treatment may shorten the duration and keep pain to a minimum.

• Get your child the chickenpox vaccine to protect her against chickenpox, and so that she has a far less chance of getting shingles in the future.

Learn more about shingles exposure and chickenpox during pregnancy.

 

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

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

 

Hand, foot and mouth disease

08
Jun
Posted by Lauren

hand, food and mouthThe cold weather is over, along with those winter viruses, hurrah! But not so fast- you may still need to keep an eye out for hand, foot and mouth disease (HFMD), a viral infection most common in the summer and fall. There isn’t a vaccine to prevent the disease and there are limited treatment options, but you can take steps to reduce your family’s risk.

HFMD is caused by the Coxsackie virus. It is most often seen in infants and children younger than 10 years of age.

Signs and symptoms of HFMD include a fever and small painful sores in your child’s mouth, on the tongue and inside the cheeks. You may also see a rash, often with blisters on the hands and soles of the feet. Your child may experience headaches and loss of appetite, too.

Some children may have the virus and not show any symptoms at all, but they can still pass the virus on to others. HFMD can be spread through coughing, sneezing or contact with feces, especially when changing diapers.

What to expect

Your child’s provider will conduct a physical exam and evaluate your child’s symptoms. The provider may test specimens from the throat or stools and may test your child’s blood or urine to see if your child has the virus.

There is no specific treatment for HFMD, however medications such as acetaminophen may be taken to manage HFMD symptoms. Usually your child’s fever will last 2 to 3 days and the mouth sores will heal in 7 days. The rash on the hands and feet can last 10 days and will then start to peel. It is important for children with HFMD to drink plenty of fluids to prevent dehydration. Your child may be dehydrated if she has fewer than six wet diapers in 24 hours, sunken eyes, or lack of tears when crying.

Nearly all patients recover from HFMD in 7 to 10 days without medical treatment. On occasion, complications do arise, which may become serious quickly. Call your child’s provider if you think your child is dehydrated, has a fever for more than 3 days or if you think her symptoms are getting worse.

Protection and prevention

• Make sure you and your family wash your hands frequently, especially after changing diapers.
• Avoid contact with anyone who is infected with the virus.
• If your child does get HFMD, keep her out of school, day care and swimming pools for the first few days of her illness.
• Be patient. It will only be a matter of time before your child is back to enjoying her summer.

Celebrating Virginia Apgar

05
Jun
Posted by Sara

virginia_apgarHave you heard of the APGAR score? It is the very first test given to your baby. The APGAR score was developed by Dr. Virginia Apgar, an obstetrical anesthesiologist, in 1952. It is still used all over the world to quickly evaluate a baby after birth. Dr. Apgar is also a pivotal figure in the history of the March of Dimes. She served as the first Medical Director and she helped to redirect the March of Dimes mission from polio to birth defects and other infant health problems, including premature birth.

What is the APGAR score?

The APGAR score is designed to check your baby’s condition at 1 minute and 5 minutes after birth. Your baby is checked for five things:
A – Appearance; skin color
P – Pulse rate
G – Grimace; reflex (measured by placing a bulb syringe in the baby’s nose and seeing the response)
A – Activity; muscle tone
R – Respiration

Each category is given a score ranging from 0-2. The numbers are then added up for a final score. Babies who receive an APGAR score of 7 or more probably have come through delivery fine and are in good condition. A score of less than 7 quickly indicates whether the newborn needs special observation or, perhaps, medical attention to address or prevent a more serious problem. The baby can be referred to the appropriate specialist within moments of birth. The swift medical attention may be a lifesaver.

While the APGAR score is an accurate and very helpful tool for medical personnel it cannot predict how healthy your baby will be in the future. It simply evaluates how your baby is responding after the birth process and if he may need some additional assistance as he adapts to his new environment.

The strength of the APGAR score is its simplicity. While the score has been refined over the past 60 years, it has rarely been improved.

Dr. Apgar and the March of Dimes

Dr. Apgar joined the March of Dimes in 1959. After a severe epidemic of rubella (German measles) in 1964 and 1965 that resulted in thousands of birth defects and fetal deaths, she initiated March of Dimes programs to promote rubella immunization. She also promoted the effective use of Rh immune globulin in pregnant women to prevent hemolytic disease of the newborn due to Rh incompatibility.

In 1972, Dr. Apgar helped to convene the first Committee on Perinatal Health. A joint effort of the American Medical Association, the American College of Obstetricians and Gynecologists, the American Academy of Family Physicians, the American Academy of Pediatrics, and the March of Dimes, this committee developed a plan to improve maternal-fetal health and reduce infant mortality. In 1976, the committee produced the landmark study, Toward Improving the Outcome of Pregnancy, which set forth a model for the regionalization of perinatal care in the United States.

June 7th is Dr. Apgar’s birthday. Dr. Apgar is remembered as a caring, enthusiastic teacher, colleague, and physician. Her enduring legacy still influences the mission of the March of Dimes today and her accomplishments continue to improve the health of babies all over the world.

Caring for your sick baby

03
Jun
Posted by Barbara

soothing crying babyRecently, one of our health education specialists received an email from a new mom asking what she should do for her four month old daughter who was crying, not feeding and seemed hot to the touch.

The Pregnancy and Newborn Health Education Center has been answering questions from the public for nearly two decades. We provide scientifically based responses to questions on pregnancy (including preconception, complications and postpartum care), prematurity, birth defects, infant and young child care, delays and disabilities, and other health related topics.

In the case of this new mom, the health education specialist recommended that the mom take her baby to see her health care provider. Babies can get sick very quickly, and the only one who can make the judgment as to what is going on, is a medical professional who examines the baby.

But, often a mom needs information about a condition, and that is where our website can be an enormous help.

 Well and sick baby care is on our website

We provide tons of info on what to do if you suspect that your baby or child is not well. You will

Here’s a sampling of other topics that you’ll find on our website:

Croup
Ear infections
Cytomegalovirus
Neonatal Abstinence Syndrome
Roseola
Reflux
Thrush
Teething

There are many more conditions -take a moment to look through and familiarize yourself with our website. It is rich with information.

Birth defects and special needs

You can also find information on various birth defects and disabilities, from autism spectrum disorder to thalassemia. You can learn how to get services for your baby after the NICU, too. Once you review the information, if you are not sure about how to care for your child, or would like more information about a particular health condition, send an email to AskUs@marchofdimes.org. We will be happy to provide an answer to your question within two business days.

If you are unsure, or it is a problem that cannot wait, always contact your health care provider or take your child to the nearest emergency room.

For other posts on how to help your child with a delay or disability, view our Table of Contents.

 

Birth announcements for your preemie

01
Jun
Posted by Lauren

birth announcementThe birth of your baby is such an important and joyous time in your life. Many moms want to commemorate the birth by sending out birth announcements to friends and family. I remember when my nephew was born, my sister-in-law put together a small photo shoot in her living room in order to have the perfect picture to include on the birth announcement. Many parents, however, don’t anticipate giving birth early and having a baby in the NICU. If your baby was born weeks or even months ahead of schedule, how should you announce your baby’s birth?

As your baby is being cared for in the NICU, you may feel like you are riding an emotional rollercoaster. You don’t have to send out birth announcements right away. Your first priority is taking care of your baby (and yourself). Birth announcements are typically mailed out anywhere from a few days to a few months after the arrival of your little one, so wait until your baby’s health stabilizes and you feel ready to focus on it.

What if your baby was born weighing 3 pounds, or less – should you include the weight on the announcement?

This is totally up to you. If you feel uncomfortable sharing that information on a birth announcement, you don’t need to include it. Many parents of full-term babies often leave their baby’s weight off the announcement. You can include your baby’s name and date of arrival, which are the details family and friends really want to know.

Your baby’s birth may not have gone as planned, but as your rollercoaster ride starts to slow, you will want to give your child the welcome celebration that she deserves.

Preparing your child for a natural disaster

29
May
Posted by Sara

storm clouds, hurricaneNatural disasters such as earthquakes, tornadoes, wildfires, or hurricanes, can affect children differently than they do adults. Disasters cause an extreme amount of stress for anyone but children have unique needs. According to the CDC:

Children’s bodies are smaller and more vulnerable than an adult’s.
• Children are more likely to get sick or severely injured in a disaster.
• They breathe in more air per pound of body weight than adults do and therefore will breathe in more toxins or debris.
• They have thinner skin that is more easily hurt.
• Since children have less fluid in their bodies, fluid loss (such as dehydration or blood loss) will have a more significant effect on their health.
• They are more likely to lose body heat.

In an emergency, children need help from adults.
• Children may not know how to react, so older children may look to adults for cues. Younger children may scream or cry.
• Some children may not be able to explain where or how they are hurt.
• Children cannot make medical decisions for themselves and will need an adult to get medical treatment.

Disasters can be more stressful for children.
• Children may feel out of control.
• They do not understand the situation.
• They have less practice recovering from difficult experiences.

If you have young children, one of the most important things that you can do to keep your family safe in a disaster is to make a plan.  Planning for a disaster means knowing what to do in each possible situation.

Prepare: Before creating your disaster plan, it’s important to know what types of emergencies are likely in your area and the best way to respond. Different events may require different strategies. You can find more information about tornadoes, wildfires, earthquakes, and hurricanes on our website. If you are pregnant or have a young infant, these factsheets will help you understand your unique needs and prepare for an unexpected event.

Talk: Spend time with your family discussing natural events that may occur in your area. Use simple words that even very young children can understand.

Practice: Practice your family evacuation plan so that during an emergency you can leave quickly and safely. Find the safe spots in your home for each type of disaster. For example, during an earthquake you would want to practice “drop, cover, and hold on” under a sturdy desk or table. During a tornado, you would want to seek shelter in a lower level room without windows.

Respond: Stay as calm as you can, since your reaction is likely to influence how your child responds. If you need to go to a shelter, bring any medications you or your children need. Also, bring small toys that will make them feel at home.

Recover: If appropriate, let children help in clean-up and recovery efforts. This can help to increase their sense of control. Try to get back into normal routines as soon as you can.

Ready.gov has a lot of information that can help you make an emergency preparedness plan. And if you have a baby or child with special needs, make sure you read our post Preparing for disasters when you have a child with special needs.

Questions?  Send them to AskUs@marchofdimes.org.