Archive for the ‘Help for your child’ Category

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

Knowing your family health history may help your baby

Wednesday, November 18th, 2015

Family at Thanksgiving dinnerRecently I had an appointment with a new healthcare provider and had to complete a health history form at my first visit. It was 3 pages long and took me about 20 minutes to do while in the waiting room. As I was sitting there, I realized that I didn’t know the answers to some of the questions, especially about my relatives.

Was this really that important?

In one word? Yes.

A family health history (FHH) form is a record of health conditions and treatments that you, your sisters, brothers, parents, aunts, uncles, grandparents and great grandparents have had. It can help you figure out the medical problems that run in your family. Knowing your FHH may just save your life. It may also have a direct effect on your baby’s health.

How can a FHH form help your baby?

The FHH form will help your provider see if any of the conditions or diseases that run in your family will affect your baby. For example, premature birth can run in families. And, certain conditions such as diabetes or high blood pressure put you at a higher risk to have a premature baby.

If you and your partner complete a FHH form and share it with your prenatal provider, you may learn about the health of your baby before she is born. The earlier in your pregnancy that your provider is aware of health conditions, the sooner your provider can decide on treatments for you.

It would be even better if you could complete and share this information with your provider before pregnancy, at a preconception checkup. This way, your provider can help you become as healthy as possible before pregnancy.

Use our FHH form

Here is a form that you can print out and complete.  Print one copy for yourself and one for your partner/spouse. We suggest you take it with you to family gatherings (Thanksgiving anyone?) and ask your relatives to help you fill in the blanks. You may very well find out information about diseases and conditions that run in your family and put you at risk. Early detection is often key in successfully managing a disease.

Here are tips on how to gather information from relatives.

Knowing your risk for certain conditions and that your provider is on top of treatment options, should put your mind at rest. And, knowing you are doing your best to take care of your baby’s health should make you feel even better.

So, when you sit down to apple pie, start a conversation, and fill in your FHH form. The information you share with your family may make a positive difference in everyone’s lives.

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

Skin to skin contact helps your baby AND you

Wednesday, November 11th, 2015

Skin to SkinResearch has shown that skin to skin holding, also known as “kangaroo care,” is one way to help stabilize your baby’s body temperature and help his heart rate become regular. It is comforting to your baby, and may help him gain weight. Even very sick or fragile babies can usually benefit from kangaroo care.

It’s good for parents, too. It helps you bond with your baby, which boosts your spirits. For moms, it encourages your breast milk supply, too.

What is skin to skin holding or kangaroo care?

It is when you hold your baby, skin to skin, bare chest to bare chest, in an upright position. Your baby is wearing only a diaper.

Does it have other benefits?

Yes. For your baby…

Skin to skin holding may help lower the risk of infection, improve survival rates, and encourage your baby to spend more time in deep sleep (which is important for growth and good health). It may also lessen your baby’s pain and help with brain development. Kangaroo care may help your baby spend more time being quiet when awake, and less time crying.

For you and dad…

Skin to skin increases the feeling of intimacy between the baby and parent, helping the mom or dad feel connected. Often dads are fearful of holding their baby – skin to skin may promote a sense of empowerment and confidence. It may decrease anxiety, fear and depression and encourages attachment. Parents say it is the most comforting activity they experience in the NICU.

One mom told us she wrote in her journal “Today I feel like a mother for the first time” – that was the first time she held her twin boys skin to skin, 5 weeks after they were born!

Should you ask to hold your baby?

Yes! If you have not yet held your baby skin to skin, ask if you can. Often, the NICU staff is just so busy with other important duties that they don’t think to offer it. Typically, your baby must be medically stable before he is ready for kangaroo care. But, you can do it even if your baby is hooked up to machines.

How much kangaroo care should you do?

The more you can do, the better. It has been shown that skin to skin contact should take place for a minimum of one hour, but several hours at a time are better. It takes a while for a baby to transition from the isolette to chest and back, so you must take that into account. In some countries, parents are encouraged to do kangaroo care round the clock – that’s how good it is for babies!

Still wondering if skin to skin holding is for you?

Watch this video.

Did you experience kangaroo care in the NICU? Please tell us about it.

 

Have questions? Email or text AskUs@marchofdimes.org. We are here to help.