Archive for the ‘Help for your child’ Category

Why reading aloud to your baby is so important

Thursday, February 16th, 2017

AA baby mom dad brother in NICU.jpg.resizedDid you know that reading to your baby helps promote language skills? Science has shown that reading to your baby helps build vocabulary, speech, and later reading comprehension, literacy and overall intelligence. Yet, less than half of children under the age of 5 are read to every day.

Reading aloud to your child is such an important aspect of language development that the American Academy of Pediatrics (AAP) offers guidance on how to read to your child, including book suggestions for every age.

But what if your baby is in the NICU?

Even if your baby is in the Newborn Intensive Care Unit (NICU), it is still incredibly valuable to read to him. The March of Dimes is partnering with Jack and Jill of America, Inc. to provide books to families who have a baby in a NICU. Parents are encouraged to choose books and read to their babies as often as they can.

In this resource, the AAP explains “Why it is never too early to read with your baby.” They say: “When parents talk, read, and sing with their babies and toddlers, connections are formed in their young brains. These connections build language, literacy, and social–emotional skills at an important time in a young child’s development. These activities strengthen the bond between parent and child.”

Why start reading today?

Today is World Read Aloud Day, a perfect time to start a new routine of reading to your child.

If you’re not sure what to read, you can ask your local librarian in the children’s room. You can also acquire books for a home library at second hand stores or even recycling stations. The “dump” in the town where I raised my kids has a book shed where you can drop off or pick up used books for free. And don’t forget, garage or yard sales are great places to get books for nickels. Having a mini-library at home has been shown to help children get off on the right academic foot.

But perhaps the best reason to read to your child is because it brings you together. The snuggles and cuddles, laughter and silliness that may result from reading a wonderful book, brings happiness to both parent and child.

Whether it is in the NICU or at home, reading aloud to your child is one of the most powerful things you will ever do. So grab a book, snuggle up, and enjoy!

 

Parent navigators – a lifeline for NICU moms and dads

Tuesday, January 17th, 2017

Preemie on oxygen.jpg resizedIf you’re the parent of a baby born prematurely, you know the stress and anxiety that is a part of having your baby in the Neonatal Intensive Care unit (NICU).  Even if the entire NICU staff is super supportive and answers your every question, you may still feel like you’re on an ocean in a life raft without oars or directions. The feeling can be overwhelmingly scary.

Then, once your baby is discharged from the NICU, you may begin a whole new journey of medical visits, specialists, therapies, and figuring out the complex world of health insurance. If your baby has special healthcare needs, these next steps may be confusing at best.

Enter Parent Navigation Programs. These are programs designed to assist parents of children with special healthcare needs. The hook is that parents are assisting parents. The parent navigators have been in their shoes, as they have children with special healthcare needs.

One of our NICU Family Support Partner hospitals, Children’s National Health System in Washington D.C., employs parent navigators to provide support to parents of children with complex medical conditions. They help the parents of newly diagnosed babies or young children navigate the complicated healthcare system to get the care their child needs and to access vital community resources. And, perhaps the best part is that these parent navigators provide the emotional support that only another parent of a special needs child can fully understand.

Children’s National started their Parent Navigator Program in 2008, and is now launching a new program aimed specifically towards parents of newborns in the NICU. These babies may be born prematurely (before 37 weeks of pregnancy), with complex medical conditions and/or with birth defects.

“This short-term, peer-to-peer “buddy” program looks to decrease stress, anxiety and depression in mothers of NICU babies during hospitalization” says Michelle Jiggetts, MD, MS, MBA, Program Administrator of the Complex Care Program and the Parent Navigator Program at Children’s National.

The success of this new program will be measured scientifically, by looking at the differences between parents who leave the NICU with a parent navigator, and those who do not. They will measure caregiver stress, anxiety and depression, as well as the amount of healthcare services a baby uses after leaving the NICU. The hope is that the group that had the benefit of a parent navigator for a year following their baby’s hospital discharge, will fare better overall – both parents and baby. You can learn more about this unique program, here.

According to Dr. Jiggetts, the parent navigator’s role is to:

  1. Provide peer-to-peer mentoring and support
  2. Link families to community resources and support groups
  3. Coach parents to be active partners and communicate effectively with health care providers
  4. Suggest useful tools (e.g. care notebooks) to help organize medical information
  5. Help families navigate the healthcare system and insurance issues
  6. Encourage families to focus on self-care

It seems like a no-brainer that a program like this will be incredibly helpful. As we all know, babies don’t come with instruction manuals, and infants with special healthcare needs have their own intense challenges. Having a peer “buddy” available to provide the low-down each step of the way must be a life-line that any parent would appreciate, but especially a parent of a preemie or baby with a health condition.

Even though you’re in a life raft on that ocean, you’ve now been given oars and a compass, and land is in sight.

 

Recognizing families who care for preemies

Wednesday, November 9th, 2016

Preemie on oxygen_smIn addition to November being Prematurity Awareness Month, it’s National Family Caregivers Month. These two themes go together well. Caring for a premature baby can take a huge toll on parents and families. The focus is on the baby (naturally) which can be a round-the-clock roller coaster ride. But, who cares for the parents and other children?

Recently I attended a meeting for parents of special needs children. The common theme that day was coping. Parent after parent talked about the impact that one child can have on an entire family. When medical issues are present, as they are with a preemie, it is understood that everything else stops while you care for and make serious decisions related to your baby. If you have other children, they take a temporary back seat to your sick baby. Everyone pitches in to do what they must do to survive the crisis of a NICU stay.

Once the baby is home, the crisis may seem like it is over, but often it is only the start of a new journey – one with visits to more specialists than you knew existed, appointments for speech, physical,  occupational and/or respiratory therapy, a schedule of home exercises, and navigating the early intervention system. Thankfully, these interventions exist to help your baby, but it is clear that this new schedule can resemble a second full-time job.

If a parent is alone in this process (without a partner), it can be all the more daunting. Without a second set of eyes to read insurance forms, or a second set of hands to change a diaper when you are desperate for a shower, it can feel overwhelming.

What can you do?

This month is a good time to remember to reach out and ask for help. Friends often want to take a bit of the burden off of you, but simply don’t know how they can be helpful. Be specific with them. If you need grocery shopping done, send out a group text to your buddies and ask if anyone could swing by the grocery store to pick up a few items for you.

Try to set aside a couple of hours each week, on a regular basis, when you know you will have a respite. It could mean that your spouse takes care of the baby while you go take a walk or join a friend for coffee. Or, your parent or grandparent could take over for a bit so you and your spouse could watch a movie together. It doesn’t have to be a lot of time – but just knowing it is scheduled gives you something tangible to look forward to, which helps to keep you going and lift your spirits.

In other blog posts, I share ways parents can take the stress off. See this post for a list of survival tips, and this post for how to care for the brothers and sisters of your special needs child. They need special TLC!

Be sure to check out the Caregivers Action Network’s helpful tips for families as well as their useful caregiver toolkit.

If you are like me and have trouble relaxing, see “Stop. Rest. Relax…Repeat.” It may just inspire you to break the go-go-go-all-the-time pace and find ways to relax. Believe me – once you grab those precious moments to refuel, you will be glad you did. Your body and mind will thank you, and so will your family.

Do you have tips for coping? Please share.

View other posts in our Delays and Disabilities series, and send your questions to AskUs@marchofdimes.org.

 

 

Respiratory Therapists help babies and families breathe easier

Wednesday, October 26th, 2016

help-breathingIf your baby is in the neonatal intensive care unit (NICU), it can be nerve wracking to see him hooked up to machines, especially if he is having difficulty breathing. This is when a respiratory therapist (RT) can help.

“If a baby needs respiratory support, parents should not be afraid. We give them only what they need” says Ana Anthony, a respiratory therapist at Children’s National Health System in Washington, D.C., one of the finest children’s hospitals in the nation.  Ana notes that “Every day may be a different challenge. The babies will go through ups and downs – the body is very complex. Our goal is to have the baby breathe on his own.”

It’s Respiratory Care Week, a time to recognize the respiratory care profession and to raise awareness for improving lung health. According to the American Association for Respiratory Care, “Respiratory therapists provide the hands-on care that helps people recover from a wide range of medical conditions.”

Respiratory therapists work in a variety of settings including a hospital NICU. Babies born too early run the risk of having breathing problems because their lungs may not be fully developed. Other babies might have breathing issues because of an infection or birth defect.

Due to numerous medical breakthroughs, more and more babies who need treatment for breathing problems or disorders benefit from respiratory therapy. In fact, neonatal respiratory therapy has become its own medical sub-specialty. A neonatal-pediatric RT is trained to use complex medical equipment to care for the smallest babies with mild to severe breathing challenges. They visit their patients daily, as often as needed.

You may have been introduced to your baby’s respiratory therapist if you have a baby in the NICU. A respiratory therapist would have evaluated your baby’s breathing soon after your baby arrived. The RT looks to see if your baby is breathing too fast, if the breaths are shallow, or if your baby is struggling to breathe. Then, together with the NICU healthcare team of doctors, nurses and other specialists, the RT develops a care plan to help your baby.

Respiratory therapists are rigorously trained, first earning a college degree and then specific certifications. For example, Ana holds several credentials: a BSRC (bachelor’s degree in respiratory care), RRT-NPS, (registered respiratory therapist with a neonatal pediatrics specialty), AEC (asthma education certification) and ECMO (extra corporeal membrane oxygenation). If these titles sound impressive, it’s because they are! RTs are put through intense education and hands-on training and stay current with breakthroughs or changes in the field by obtaining different certifications.

Ana Anthony speaks for all RTs when she says “We love what we do and strive to have the best outcome possible for all our patients.”

 

You can learn more about respiratory issues that preemies may face, in our article. Did your baby receive care from a respiratory therapist? Tell us about your experience.

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

Note:  This post is part of the series “Delays and Disabilities: How to get help for your child.

 

Here’s a tool to monitor your child’s physical development

Wednesday, July 20th, 2016

Baby with rubber duckyFrom sitting to crawling to standing, there is a wide range that is considered typical development for children at a given age. Parents often see other babies or children engaging in activities that seem advanced for their child of the same age, especially if their baby was born prematurely. Time to worry?

The American Academy of Pediatrics has an easy tool to help parents know what to do if they are wondering about their child’s physical development. This interactive tool will help you see if you should be concerned at any point, and if so, what to do about it.

Simply choose the activity you are worried about (holding his head up, rolling over, bringing things to his mouth, grabbing or holding toys, sitting up, standing up, walking, going up or down stairs, running) and it will take you to a page where you can see your child’s age and learn what is typical. It also tells you what to can do at that point.  For example, if you are concerned that your two month old can’t hold his head up, it advises “Before your next visit (with your provider), make sure your child is getting “tummy time” a few times a day when she’s awake and playful.”  It will also tell you when you should make an appointment with your child’s provider. Check it out!

Of course, a chat with your child’s health care provider is always suggested and could relieve you of lots of undue worry. But this tool is a real help when you are concerned and want a quick answer, even before you can make the appointment.

Parents, you know your child best. Here are a few tips on how to start the conversation with your child’s healthcare provider as well info on developmental milestones.

Have questions? Our health education specialists are here to answer them. Text or email AskUs@marchofdimes.org.

 

The Zika virus may stop brain development causing microcephaly and birth defects

Wednesday, June 22nd, 2016

mosquito_3DWhen a woman is pregnant and is infected with the Zika virus, it may cross the placenta and may stop the development of a baby’s brain. Zika infection during pregnancy causes a birth defect called microcephaly as well as other brain problems known as “fetal brain disruption sequence.”

Microcephaly means small (micro) head (cephaly) – a baby’s head is smaller than the heads of babies of the same age and sex. Microcephaly does not always cause serious problems for a baby. But in certain cases, microcephaly can cause lasting consequences, such as intellectual and developmental disabilities. Babies born with microcephaly may have cerebral palsy, poor growth, face deformities, feeding problems, seizures, problems with hearing or vision, and hyperactivity. They may face life-threatening medical conditions. Microcephaly caused by the Zika virus may be severe and is extremely concerning.

There is no cure for microcephaly. Babies with microcephaly will need regular medical check-ups and follow up care. Many will need specialized treatment by doctors such as a neurologist, developmental and behavioral pediatrician, and rehabilitation specialists. Early intervention services for babies and toddlers as well as special education services for children ages 3 and older, may be essential in helping a child develop.

Fetal brain disruption sequence refers to the halting of the development of a baby’s brain as a result of being exposed to the Zika virus. This stop in development can result in a wide variety of health problems for the baby, which can be lifelong.

The Zika virus may also be linked to growth problems in the womb, miscarriage and stillbirth.

Vaccine progress

Currently, there are no FDA-approved vaccines to prevent Zika. But, the FDA (The US Food and Drug Administration) has approved the first Zika vaccine study in human volunteers, ahead of schedule. Clinical trials should begin in the next few weeks. Although this is great news, it could take years before a safe vaccine is available to the public.

How can you stay safe?

The Zika virus is real and dangerous. Until a vaccine is available, learn all you can about how to stay safe.

The March of Dimes maintains up-to-the-minute information and materials for women and families on our website and social media. All of our information is drawn from the Centers for Disease Control & Prevention (CDC) and other trusted sources, and available in both English and Spanish. Learn more at:

marchofdimes.org/zika
nacersano.org/zika

Check out our Twitter handle @modhealthtalk for the latest Zika news and Twitter chats.

You can help us spread the word about the Zika virus by passing along our bilingual factsheet which tells you how to protect yourself and others from Zika.

Have questions? Send them to AskUs@marchofdimes.org.

 

The NICU dad – Superman has nothing on him

Wednesday, June 15th, 2016

This post is dedicated to all dads, in honor of Father’s Day.

kangaroo-care-dadFatherhood is not supposed to start in a NICU.

When the birth of your baby is unexpectedly early or if your child has medical issues, you may find yourself coping with the stress of having your baby in the hospital. The anxiety and fear about your baby’s special health care needs can be overwhelming. Add to that the emotions your partner may be experiencing, coordinating work, NICU visits, and possibly other children, and you have one difficult situation.

But, a NICU dad is strong and resilient.

He spends time in the NICU holding his baby skin to skin (kangaroo care). He sings and talks to his baby.

He asks questions and makes decisions about his baby’s medical care.Parents in NICU w baby R

He is reassuring and comforting to the mother of his child, as she physically and emotionally heals from pregnancy and childbirth, and copes with fluctuating hormones.

A NICU dad runs pumped breastmilk to the freezer, washes bottles and encourages mom to pump if she can.

If there are other children at home, dad becomes the coordinator of the home front. He makes lunches, runs kids to school, helps with homework, and reassures the children that mom will be home soon. Dad takes care of pets, cleans, grocery shops and hopefully delegates tasks to family members and friends to help out.

Through it all, it can be hard for a dad to take care of himself. He needs sleep, good food and breaks to exercise and relax. It’s important that he takes the time to re-fuel so that he can be the best champion for his baby that he can be. Relying on friends and family to help may not come naturally at first, but a NICU dad soon learns that it takes an army to get everything done.

Although becdad-with-preemie2oming a dad in the NICU was not the original plan, every path to fatherhood is unique. It has its own rewards and lessons. March of Dimes recognizes every dad’s efforts and dedication. We know that every dad is making a difference in his baby’s life. Dads are important, appreciated and very much loved!

Do you have a NICU dad you’d like to honor? Please share your story with us.

 

How to cope when your baby is in the NICU

Monday, June 6th, 2016

parents in the NICUToday we are fortunate to have Dr. Amy Hair, neonatologist and director of the Neonatology Nutrition Program at Texas Children’s Hospital, answer our questions on how parents can cope if their baby is in the NICU. Thank you Dr. Hair!

What is the first thing families should know when their baby is admitted to the NICU?

Parents should know that they are a vital part of the care team for their baby and the doctors, nurses and staff value their opinions and instincts.

Parents often find their first visit to the NICU overwhelming, but in time, they’ll become accustomed to the physical environment and start to tune out all of the machines, beeping and noises and just focus on spending time with their precious baby.

Depending on the baby’s illness and how premature they were born, parents will see machines, wires, hear beeping and other potentially alarming noises. We try to introduce parents to their baby’s environment and explain what each piece of equipment is used for, what the numbers are on the monitor (vital signs) and the wires they see are routine leads to pick up the heart beat tracing (EKG leads). At first glance, the NICU may appear frightening and may concern some parents but most babies in the NICU, regardless of how severe their illness is, receive the same type of cardiopulmonary monitoring (vital signs monitoring).

The most common types of equipment parents will see in the NICU are cardiopulmonary monitoring wires, incubators and respiratory support systems.

There are so many people in the NICU. How do I know who to talk to if I have a question?

The entire NICU team is there to help support and take care of babies and families in any way possible. Parents should feel free to reach out to any NICU staff with questions and concerns. If they do not know the answer immediately, they will work to find the answer as quickly as possible.

How can parents cope when their baby is in the NICU, especially if they have jobs, other children or travel a distance to the hospital?

In addition to the stress and fear they feel while their child is in the NICU, parents are going through many changes. Mothers are experiencing body changes, hormonal changes and role changes and fathers are adapting to their new role as a dad as well. If you become overwhelmed, ask for help. Remember that it’s okay to take care of yourself so that you can better take care of your baby.

Access your community resources or local support systems whether this is family and friends, a faith community or neighbors to help you with things such as babysitting your other children, cooking meals, running errands, etc. This will allow you more time for NICU visits without the overwhelming feeling that you are neglecting other aspects of your life.

Any other words of wisdom to offer parents?

We know parents can’t be here 24/7. Call the NICU any time you like. Although you may feel like you are pestering the team, this is never the case. We know that your baby is your number 1 priority regardless of your physical location and we are always happy to answer your questions regarding his or her status and well-being.
Amy-Hair-MD-PFW

 

As a Neonatologist, Dr. Hair specializes in care for infants born at the edge of viability as well as infants born at term or earlier with congenital defects or other conditions that need specialized intensive care. Her research focus is neonatal nutrition, specifically evaluating how our smallest premature babies grow during their hospital stay.

 

 

Holidays & your child with special needs- tips for the NICU, visiting Santa, dinners & traveling

Wednesday, December 9th, 2015

Parents in NICUFrom spending holidays in the NICU, finding developmentally appropriate toys, eating at Grandma’s house (without a meltdown!), to visiting Santa in a loud, bright mall, the holidays can be oh so hard for a child with special needs. Here is a walk down blog post memory lane to help you get through the next few weeks and even have some fun.

We wish you a stress-free, calm, smooth holiday season. If you have any tips that have worked for you, please share them! You can find more posts on parenting a child with special needs, here.

Questions? Send them to AskUs@marchofdimes.org.

 

Hearing loss in babies

Wednesday, December 2nd, 2015

baby's hearing testHearing impairment is the decreased ability to hear and discriminate among sounds. It is one of the most common birth defects.

We’re not sure what causes hearing loss in babies. Some possible causes are genetics (if you or your partner has a family history of hearing loss), viruses and infections during pregnancy, premature birth, low birthweight (less than 5.8 pounds), and infections after birth.

There are degrees of hearing loss, too. A baby can have mild, severe or complete hearing loss. Other times a child can hear but the sounds are garbled. Hearing loss is a common birth defect affecting 12,000 babies in the U.S. each year (nearly 3 in 1,000). If a child can’t hear properly, he may have trouble learning to talk.

Newborn screening

Ideally, your baby should have his hearing tested as part of the newborn screening tests which are done in the hospital after your baby is born. The CDC recommends that all babies be screened for hearing impairment before 1 month of age. Language and communication develop rapidly during the first 2 to 3 years of life, and undetected hearing impairment can lead to delays in developing these skills. Without newborn screening, children with hearing impairment often are not diagnosed until 2 to 3 years of age. By then, they have lost precious time to develop speaking skills. A timely diagnosis is important!

Getting help

If you have any concerns about your child’s hearing, don’t wait – have a conversation with his healthcare provider (a pediatrician or nurse practitioner). Here are other options:

  • Every state has an Early Hearing Detection and Intervention (EHDI) program. You can click here or call 1-800-CDC-INFO to locate your local EHDI program for services and information.
  • The CDC’s National Center on Birth Defects and Developmental Disabilities has a website on hearing loss in children, with specific pages for families, health care providers and others. The site contains information on prevention, signs and symptoms, screening and diagnosis, treatment of hearing loss, as well as statistical data on hearing loss. If you have any concerns about your child, start with the “Basics” and “Treatments” sections.
  • Additional resources and support networks related to hearing impairment and deaf children can be found here.
  • If your baby has a hearing impairment,  he may benefit from early intervention services, such as speech therapy. Learn how to access early intervention services in your area.

Bottom line

If your child has been diagnosed with hearing loss, getting help early is very important – preferably before 6 months of age.

Have questions: Text or email us at AskUs@marchofdimes.org.

Photo credit:  Baby’s First Test