News Moms Need

It is important to know what to do to protect yourself and your family in case of an emergency.  It is essential that you know what to do if you have a baby or child with special needs.

Since June is National Safety Month sponsored by the National Safety Council, and this week’s theme is emergency preparation, it is appropriate that I talk about how to prepare for an emergency when you have a child with special needs.

Where can you find information?

Family Voices is an organization dedicated to helping families care for their special needs children. They offer tips on how to keep your special needs kids safe in an emergency or disaster. They say:

“If your son or daughter has special health care needs, your emergency plan will probably be more complicated, involve more people, and may require equipment. This will be the case if your child or youth:

   • Depends on electricity — to breathe, be fed, stay comfortable;
   • Cannot be moved easily because of his medical condition or attachment to equipment;
   • Uses a wheelchair, walker, or other device to move;
   • Cannot survive extreme temperatures, whether hot or cold;
   • Becomes afraid or agitated when sudden changes happen;
   • Cannot get out of an emergency by herself for physical or emotional reasons.”

They recommend you download the interactive emergency form available on the American Academy of Pediatrics (AAP) website. This is a terrific resource which can be updated as your child grows and changes. You can see all of Family Voices ideas and resources on their webpage. They also have “Family-to-Family Health Information Centers” (F2F HICs) in every state to “provide assistance and support in emergency preparation.”  Click here to learn more about the F2F HICs, or to find one in your state. 

Our website has lots of good info on how to prepare for a natural disaster. In addition, Ready.gov has info for families with individuals who have special needs. They have an easy to follow preparation list. You will also find all sorts of tips, such as how your phone can alert you of an impending emergency.

How can your kids help?

You can get your kids involved in creating a plan, too. It helps them to feel involved and to better remember what to do when the time comes, because they helped to create the plan. Ready.gov has a kid-friendly webpage with activities to get them engaged in preparing for an emergency, which includes an activity book for kids.

They also have a printable brochure with tips on how to prepare for a disaster for people with disabilities that covers how to help individuals with functional or special access needs.

Bottom line

Don’t wait to prepare for an emergency or a disaster until it is upon you. With a little bit of foresight, you can have a plan in place and have peace of mind.  And, if or when the time comes, your special needs child will be well taken care of.

Have questions? Send them to 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 on January 16, 2013 and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the menu on the right side to view all of the blog posts to date. As always, we welcome your comments and input.

Actress and mother of two Sarah Michelle Gellar has joined March of Dimes and Sanofi Pasteur on the Sounds of Pertussis® Campaign to help raise awareness about pertussis, also known as whooping cough, and the importance of adult vaccination. Pertussis is on the rise across the U.S., and infants and young children may be most vulnerable.

“The reality is that parents, grandparents and other family members may unknowingly spread pertussis to the babies in their lives,” says Sarah Michelle Gellar. “That’s why I was vaccinated and so was my family to help protect ourselves and to help stop the spread of the disease to my two children. Now, as the National Sounds of Pertussis Campaign Ambassador I’m urging adults everywhere to do the same.”

Pertussis is a highly contagious and often serious disease, especially in young children. In 2012, there were more than 41,000 reported pertussis cases and 18 deaths in the U.S., with more than 83 percent of deaths occurring in infants younger than 12 months of age. Infants are particularly vulnerable to pertussis because they don’t begin receiving their own vaccinations until they are two months old and may not be protected until they have received at least three doses of the infant DTaP (diphtheria, tetanus and acellular pertussis) vaccine. Researchers found that in cases where it could be determined how an infant caught pertussis, family members were responsible for spreading the disease to the baby up to 80 percent of the time. More specifically, parents were responsible up to 50 percent of the time.

“Immunity from early childhood pertussis vaccinations wears off after about five to 10 years, meaning even adults who were immunized as children may no longer be protected,” says Siobhan M. Dolan, M.D., medical advisor to March of Dimes. “The best way for adults to help protect themselves and to help prevent the spread of the disease is to ensure they are vaccinated.”

Gellar is encouraging parents of infants everywhere to use the Campaign’s new Facebook application – the Breathing Room – that allows parents to send a brief message to family and friends in their Facebook network asking them to make the pledge to be vaccinated against pertussis before meeting the newborn in their life. Parents can personalize their own Breathing Room and help keep track of who in their child’s circle of care has been, or pledges to be, vaccinated against this potentially fatal disease by populating their baby’s virtual nursery with pictures of their family and friends from their Facebook network.

To learn more about the Sounds of Pertussis Campaign, please visit www.SoundsOfPertussis.com. The website provides resources and educational tools, including information on the new Breathing Room Facebook app.

Have you ever wondered what a Level I, II, or III hospital is? How will you know which is right for you when the time comes to deliver? Dr. Siobhan Dolan explains how hospital nurseries are classified in the new March of Dimes book Healthy Mom Healthy Baby.

“Every hospital with a maternity department must have a nursery, a unit devoted to newborn care. Some provide more extensive care than others. Hospital nurseries are classified by the kind of care they offer:

  Level I – Well-newborn nurseries that provide a basic level of medical care to low-risk and healthy newborns.

  Level II – Special-care nurseries that can care for infants who are moderately ill or born a few weeks early with health problems that are expected to improve rapidly.

  Level III – Neonatal Intensive care units (NICUs) with highly trained providers and advanced equipment to provide complex care, surgery, and life support for infants who are critically ill, very small, or very premature.

“If you are having a healthy low-risk pregnancy, it is not necessary to make special arrangements to give birth in a hospital with a level II or III nursery. However, if you are having pregnancy complications, or your baby has a known or suspected health problem, talk with your provider about whether choosing a hospital with a higher level of newborn care is a good idea.”

You can read more about Dr. Dolan’s book, and even order a copy, at this link.

Jaundice is a yellow coloring of the skin and the whites of the eyes. It is caused by a build-up in the blood of a substance called bilirubin. Jaundice occurs in about 60 percent of all newborns.

A baby’s skin usually starts to turn yellow a few days after birth. In most cases, jaundice is mild and does not harm the baby. Mild jaundice goes away without treatment. However, babies with severe jaundice can have high bilirubin levels, which can pose a risk of brain damage.

The American Academy of Pediatrics (AAP) recommends that all babies be checked for jaundice with a physical exam, skin test or blood test before they leave the hospital. Babies should be examined again by a doctor or nurse at 3 to 5 days of age because this is the time when bilirubin levels are highest. When necessary, a baby can be treated to prevent bilirubin levels from getting too high.

Jaundice occurs when bilirubin builds up in the blood. Each day some red blood cells in everyone’s body are recycled. Bilirubin forms as these cells break down in the recycling process. Normally, the liver removes bilirubin from the blood. The liver of a newborn may be too immature to keep up with bilirubin removal, causing bilirubin to build up in the blood. This build-up turns the skin and, sometimes, the white part of eyes yellow. Premature babies have especially immature livers, making jaundice more likely.

Breastfed babies are more likely than formula-fed infants to develop jaundice. However, jaundice occurs mainly in babies who are not nursing well. These babies may not get enough calories and may become dehydrated, both of which may contribute to jaundice. This should not be a reason to avoid breastfeeding, however, as breast milk is the ideal food for babies and provides many health benefits, including reducing the risk of infections. Breastfeeding mothers should nurse their babies at least 8 to 12 times a day for the first several days of life to help keep their baby’s bilirubin level down.

So what should new parents look for? Yellow coloring usually first appears on the face and in the whites of the eyes. You often can tell if your baby has jaundice by looking at your baby under natural daylight or in a room that has fluorescent lights. If you think there is a yellowish color, you should contact your baby’s health care provider.

Most babies with jaundice do not need treatment, but some do and it’s important to have the health care provider make that decision. Providers sometimes suggest steps you can take at home to help clear up mild jaundice. They may recommend increasing the number of feedings to encourage more bowel movements, which helps eliminate bilirubin.

If your baby has more severe jaundice, however, your provider may recommend treatment. Phototherapy is a treatment you may have seen in the hospital.  The baby, wearing only a small diaper, is placed under special white or blue lights called bili-lights. He wears shields to protect the eyes. The lights help change bilirubin into a form that can be eliminated easily in urine. In more serious cases, a blood transfusion may be necessary.

For additional information about newborn jaundice contact the American Academy of Pediatrics (AAP) or the Centers for Disease Control and Prevention.

Finding the right resource to help your special needs child is so important for a parent. It can be a lifeline. I would like to introduce you to one resource that is a sort of clearinghouse to multiple resources. NICHCY, the National Dissemination Center for Children with Disabilities has a “gateway” that should be bookmarked on your computer. On this page you can find local and national organizations that are specific to a particular topic. For instance, if you select “Babies and toddlers” as your topic and “Early intervention” as your subtopic, a list of 14 organizations will pop up with descriptions and contact info.  Likewise, if you click on “Disability” and “Developmental delay” you will find five resources. There are dozens more combinations that you can enter, which will bring you to desired resources. Exploring could not be easier.

So, let your mouse do the clicking and find many organizations and resources that are on target for your particular question.  Simplify your life with this tool and perhaps you will find a gem or two that you did not know about, which will make a difference in your child’s life…and yours.

 
Have questions? Send them to 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 on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

New moms and dads can find it hard to get used to a baby’s sleeping habits. And baby can find it difficult to get into a routine. In this video, Dr. Siobhan Dolan visits a new mom to give her tips on how to put her newborn to sleep and how much sleep to expect he will need. See if it helps you.

Before birth, a boy baby’s testicles develop in his abdomen. As birth approaches, they normally drop, or descend, into his scrotum. In a small number of cases, however, one or both testicles will not descend. This occurs more often in boys who are born prematurely as their bodies have not had enough time to fully develop.

For many of these boys, the testicles will manage to descend within the first few months of life, but not for all boys. If the testicles appear to be present at certain times (especially when he’s warm) but not at others (especially when he’s cold) this is a sign that the testicles are acting normally (they move up into or drop out of the body cavity as his body temperature changes). But if he is comfortably warm and the scrotum looks lopsided because only one testicle is present, this is a sign that the other testicle may have failed to descend. This is a condition that your child’s health care provider will want to monitor.

If over time the testicle descends as it should, nothing need be done. If, however, it has not descended by the age of one year, treatment should be considered. Treatment usually involves surgery to bring the testicle into the scrotum. When an undescended testicle remains within the body cavity for over two years, the boy has an increased chance of infertility as an adult and my not be able to have children of his own. He may also have a slightly higher risk of developing testicular tumors. If, however, treatment at age one or one and a half successfully brings the testicle into a normal position, these risks usually do not apply.

Undescended testicles are not painful. Should your son complain of pain in the scrotal area, however, call his health provider right away. You’ll want to have him checked to make sure that there is no twisting of the undescended testicle that could lead to possible permanent damage.

This weekend will you be where the weather’s warm, the sun is shining, the kids want to run around and play with the hose? (Doesn’t it feel great to get away from freezing winter?!) Don’t forget that most of us are pale from winter hibernation and are ripe for sizzling in the sun.

Here’s the pitch for today: don’t forget the sun block. I know, everybody’s talking about that right now, and they should ‘cause it’s important. We have written about the importance of using sun block before, about using one with SPF 30 and replacing it every couple of hours, etc. But this time I want to remind you while you slather on the goop to be sure to protect your children’s ears. We always get the cheeks, nose shoulders and arms, but sometimes the ears are bypassed. Wide brimmed hats are great but often get pulled off by tots, and caps will leave the ears exposed to the sun’s scorching rays. And, by the way, this goes for you, too.

If you’re pregnant, your sensitive skin might burn more easily. Read these tips and relax and enjoy the warmer weather… and don’t forget to protect your ears!

Join us on Twitter for a chat about premature babies. Moderated by @USNewsHealth, experts on the chat will be from the American Academy of Pediatrics, Children’s Hospital of Philadelphia, and the March of Dimes.

Do you have a preemie? Share your experiences in the NICU and when you finally took your baby home. Join us on Twitter this Thursday, May 23rd and 2 PM ET.  Let’s discuss the topic and learn more. To join the conversation, simply follow the hashtag #Preemie.

Can sitting in a bubble bath cause a urinary tract infection (UTI)? The answer isn’t clear, but it might contribute to one, especially in girls.

Your bladder stores urine in your body. When you urinate, the urine passes from the bladder through a tube called the urethra to exit your body. The urethra is shorter in girls than in boys, which can allow bacteria to enter the bladder more easily.

Any kind of strong soap or strong fragrance if not completely rinsed off can irritate the opening of the urethra. If irritated, it can become painful to pee and women, and especially young girls, might hold their urine longer than normal to avoid pain. Holding urine can allow bacteria to multiply and eventually reach the bladder, which can lead to infection.

Some health care professionals recommend keeping girls out of bubble baths until they are at least 3 years old. Others prefer that you avoid them completely. Regardless of age, if you, or your daughter, tend to get UTIs, don’t sit in a bubble bath. And watch out for baths that have bubbles from shampoo. Wait to shampoo her hair until the end of the bath and rinse her thoroughly, then out she gets!