Archive for the ‘Help for your child’ Category

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.

Caring for yourself as you care for your preemie

Wednesday, November 4th, 2015

Mom holding babyGetting through a pregnancy, having a baby in the NICU, and caring for a baby with special needs at home can take a physical and emotional toll on a woman’s health. This month is a good time to remember to take care of yourself, so that you are in top form to take care of your family. Not only is November Prematurity Awareness Month, it is also National Caregivers Month.

By nature, moms tend to be wired to care for their babies. The daily routine (which goes well into the night) seems to blend into the next day and week. The 24/7 job of being a mom can often feel like a blur. Have you ever asked yourself what day it was only to be surprised when you learned that it was only Tuesday? Weekends, in the sense that most people think of them – free time, sleeping late, etc. – don’t exist. In fact, a Saturday feels much like a Tuesday in the new-mom world. It consists of the same routine: feedings, diaper changes, and caring for the special needs of your preemie.

It is not surprising then, that many moms experience exhaustion and burnout. Who wouldn’t? Every human being needs rest. Constant stress coupled with loss of sleep is a recipe for a downward spiral.

Just as moms care for others, they must learn to care for themselves. Unless you were really good at doing this before your baby was born, it may take a bit of practice. Carving out bits of time to care for yourself should be top on your list. I like to call it using “snippets of time.” Here are some examples:

  • Got five minutes? Give your best friend a call. Just hearing her voice for a few minutes will give you a lift.
  • Ten minutes may not seem like a long time to you, but that is how long it takes to take a shower and feel refreshed. You don’t need to plan a long chunk of time to do that – seize it whenever you have someone you trust watching your baby.
  • Got 30 minutes alone? A walk or yoga video will help to create the energy you didn’t know you had. (Yes, exercise creates energy.)
  • Too tired to walk? Try a quick nap (best done when your baby is also sleeping). Even 15 minutes will feel like you have been turbo charged.
  • Schedule time with your spouse. Somehow, if it isn’t scheduled, it isn’t as likely to happen. If it is on the calendar, it is much more apt to become a reality. After all, if you went through the trouble to make sure someone you trust is watching your baby, then you will probably be sure you spend time together. But, again, it doesn’t have to be for hours. Even one hour out together will help to break up the 24/7 routine and give you a fresh perspective.

Somehow, your preemie caretaking will not seem so overwhelming when you get little breaks. Here are a few more ideas to help you.

How do you take care of yourself? Please share your tips.

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

 

RDS and BPD – breathing problems in preemies

Wednesday, October 28th, 2015

NICU sign 1If your baby was born prematurely, you are probably concerned about his lungs. A baby’s lungs are not considered to be fully functional until around 35 weeks of pregnancy. If your baby was born before that, it is possible that he may struggle with breathing.

 

RDS

A serious breathing problem called respiratory distress syndrome (RDS) is the most common illness in the NICU. But, the good news is that due to medical advances, babies with RDS have a 99% survival rate.

Babies with RDS struggle to breathe because their immature lungs do not produce enough surfactant, a protein that keeps small air sacs in the lungs from collapsing. March of Dimes grantees helped develop surfactant therapy, which was introduced in 1990. Since then, deaths from RDS have been reduced by half.

Babies with RDS also may receive a treatment called C-PAP (continuous positive airway pressure). The air may be delivered through small tubes in the baby’s nose, or through a tube that has been inserted into his windpipe. As with surfactant treatment, C-PAP helps keep small air sacs from collapsing. C-PAP helps your baby breathe, but does not breathe for him. The sickest babies may temporarily need the help of a mechanical ventilator to breathe for them while their lungs recover. Learn more about the differences between C-PAP and a ventilator, as well as causes, symptoms and treatment of RDS.

BPD

BPD (bronchopulmonary dysplasia) is a chronic lung disease common in preemies who have been treated for RDS. These babies may develop fluid in the lungs, scarring and lung damage. Medications can help make breathing easier for them. Usually babies with BPD improve by age 2 but others may develop a chronic lung condition similar to asthma. Learn about asthma, including questions to ask your child’s health care provider and how to help your child understand his breathing problems.

Even though the outlook for babies born prematurely has improved greatly, many babies still face serious complications and lasting disabilities. Many March of Dimes grantees seek new ways to improve the care of these tiny babies, while others strive to prevent premature delivery.

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

 

Prematurity, learning disabilities, and ADHD

Wednesday, October 21st, 2015

birth announcementPremature birth is a leading cause of lasting childhood disabilities. October is Learning Disabilities and ADHD Awareness Month – a good time to become familiar with the effect prematurity can have on learning and behavior.

Of course, many babies who are born prematurely do very well. We hear stories of preemies who had a rough start in life, spent days, weeks or even months in the NICU and years later have no serious issues to report. But, some preemies will have long-term challenges with learning or behavior.

LD and ADHD

Learning disabilities (LDs) are persistent difficulties in reading, writing and/or math skills. They are not the same as learning differences. In order to help your child with learning struggles, it is important to first understand what LDs are and are not.

Kids with LD see the world in a slightly different way. Check out this post which describes a great resource from Understood.org to give you insight into your child’s world.

Children with attention deficit hyperactivity disorder (ADHD) may have trouble paying attention, controlling impulsive behaviors or be overly active.

What are the numbers?

  • Globally, 5 million babies are born too soon every year.
  • Babies born prematurely are more likely than babies born full term to have learning and behavior problems throughout childhood. About 1 in 3 children born prematurely need special school services at some point during their school years. Learning problems may not appear until elementary or even middle school.
  • According to the U.S. Department of Education, 1 in 5 children in the U.S. has learning and attention issues. “Approximately 2.5 million students in the U.S. are identified as having a specific learning disability—such as dyslexia, dysgraphia, and dyscalculia—and as many as 6 million students are identified as having attention deficit hyperactivity disorder (ADHD).”
  • The CDC reports that in 2012 more than 5 million children aged 3–17 had ADHD (10%). Boys (14%) were almost three times as likely as girls (5%) to have ADHD.

Resources to explore

If your child struggles with learning or behavior, where should you go for reliable information?

  •  The American Academy of Pediatrics (AAP) offers articles for parents to better understand ADHD.
  • Parent Training and Resource Centers, available in every state, offer information and support to families. Find your center.
  • The Center for Parent Information and Resources (CPIR) has hundreds of easy-to-read articles on disabilities, special education and the law – including how to obtain school services for your child.
  • The Understood website provides a wealth of information and support to individuals and parents of children with learning and attention issues.
  • The State of Learning Disabilities, 3rd Edition, 2014, is a downloadable review of LD. It is available on the National Center for Learning Disabilities website where along with the statistics on LD, it describes public attitudes towards people with LD, characteristics of kids with LD, employment issues, and lots of other information.

Students with LD and/or ADHD may face challenges, but they also have strengths and may possess outstanding abilities in certain areas. Understanding your child’s strengths and weaknesses, and focusing on proven educational methods and therapies will help your child be as successful as possible.

Bottom line

Babies born prematurely are more likely than babies born full term to have learning and behavior problems. But help is available. Check out our table of contents for more information.

And if you have any questions, email or text AskUs@marchofdimes.org.

 

Physical therapy – can it help your preemie?

Wednesday, October 14th, 2015

Preemie walkingMany children born prematurely may need help catching up with developmental milestones such as sitting, crawling or walking. They may need assistance learning everyday activities such as dressing, too. Physical therapy – one type of habilitative service – may help. Habilitative services are those therapies that help a child develop new skills needed for everyday life.

October is National Physical Therapy Month. This is a great time to become aware of the benefits that physical therapy (PT) can offer your child, whether he was born prematurely or full term.

What does PT do?

Physical therapy can help your child increase strength and flexibility. It can also improve posture, balance, coordination and movement. PT usually focuses on large muscle groups, such as the legs, but it can also involve the entire body.

A physical therapist is a professional who has specific training in understanding the way a body works – especially muscle groups. She can assess your child and provide individualized therapy which will help him improve in the areas where he is weak. PTs are very creative in their approach to working with children. In fact, the therapy can be lots of fun, and most children look forward to their PT sessions.

Does insurance cover PT?

Under the Affordable Care Act (ACA), habilitative services must be covered by insurance. They are included in the ACA as Essential Health Benefits, which means they need to be covered under individual and small group health insurance plans. Check your state for specific details. For information on enrolling in your state’s marketplace for health insurance, go to HealthCare.gov or call 1-800-318-2596.

Early intervention may include PT at no cost to parents

If your child is under the age of three, he may be eligible for Early Intervention services, which is a federal program provided in every state. Physical therapy is one of many services available for eligible infants and toddlers if they qualify. Therapy is usually provided at no cost to parents.

If your child is age three or older, he may qualify for PT through your local school district as a Related Service. This post will tell you how to access it.

Bottom line

As with all delays or disabilities, it is important to seek help as early as possible. The sooner your child gets the help he needs, the sooner he can begin improving.

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

See other posts on Delays and Disabilities: how to help your child.

 

NICU parents can develop PTSD due to stress and trauma

Wednesday, October 7th, 2015

parents in the NICUParents of NICU babies have been found to be at risk for developing stress disorders, according to research. It is very scary for parents to see their infant hooked up to monitors or undergoing serious medical procedures. Every parent’s reaction to the NICU journey is different and what is overwhelming or traumatic for one person might not be for another. But for some parents, it is possible for feelings of fear, grief, helplessness and continued anxiety to result in a stress disorder.

What is a stress disorder?

Stress disorders include ASD (acute stress disorder) or PTSD (post traumatic stress disorder). These can develop in anyone who has seen or lived through a crisis or terrible event. You may have heard about PTSD in the news – many military veterans returning from active duty have developed it. The prolonged stress of deployment or the witnessing of traumatic events can trigger debilitating symptoms. But, PTSD can occur in anyone who has gone through a traumatizing event, including a NICU experience.

Every parent comes to the NICU with varying coping mechanisms, and react or handle the situation in their own, unique way. According to Stanford University researcher Dr. Richard Shaw, the NICU experience can be so traumatic that almost 60% of NICU parents were found to be at risk for PTSD. In some cases, the stress disorder continues for years after the baby’s birth.

It might seem logical that the longer a baby stays in the NICU, the more traumatic the experience may be for the parents. However, research shows that the impact of a shorter NICU stay, even less than two weeks, can lead to a parent developing ASD or PTSD. A stress disorder can occur along with postpartum depression (PPD), too.

How do ASD and PTSD differ?

ASD and PTSD share many of the same symptoms. The biggest difference between the two is when a parent’s symptoms begin.

  • ASD refers to symptoms that begin during the period from 2 days following an event up to 4 weeks post trauma. (The “trauma” in this case is the baby’s experiences in the NICU.) Symptoms usually start to occur while the baby is still in the NICU. ASD is a good indicator that the parent may later develop symptoms of PTSD.
  • PTSD symptoms occur later than ASD, starting from at least 4 weeks post trauma, and can last for years.

Both ASD and PTSD include symptoms such as trouble sleeping or staying awake, avoiding reminders of the event, and experiencing flashbacks, dreams/nightmares.

Additional symptoms of ASD include a lack of emotional responsiveness – you feel numb and like you’re in a fog.

Other symptoms of PTSD symptoms include physical responses (like a racing heartbeat or sweating) when reminded of the event, a depressed mood, persistent and exaggerated negative beliefs about yourself, little interest in activities, irritability, difficulty concentrating, hyper vigilance and startling easily.

What can lessen the likelihood of developing a stress disorder?

Researchers have found that NICU parents cope better when they:

  • feel involved with their baby’s care, such as reading to their baby, practicing kangaroo care (skin to skin bonding), decorating the isolette, taking the baby’s temperature, etc.
  • feel heard – they feel free to ask questions and fully understand what is happening to their baby in the NICU.
  • take care of themselves.
  • reach out and receive support from other NICU parent graduates who have been in their situation. March of Dimes offers an online community, Share Your Story, which is specifically designed to provide support and comfort to parents of babies in the NICU.
  • understand that the feelings of fear, anxiety, sleep interruption or loss of appetite might pop up unexpectedly once they go home.

Bottom line

The NICU experience can be difficult and even traumatizing. If you or someone you know has a baby in the NICU, please share this post with them so that they get the help they need. Parents suffering from ASD or PTSD can receive treatment from a healthcare provider who is trained in stress disorders (such as a social worker, psychologist or psychiatrist).

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

See other posts on how to help your child including how to transition from the NICU to Early Intervention services.

Your NICU healthcare team

Tuesday, September 29th, 2015

NICU doctor and baby resizedAt times, it may seem that there is a constant flow of different people caring for your baby in the neonatal intensive care unit (NICU).  A team of professionals work together to give your baby every possible chance of achieving good health.

Some or all of these people may be part of the NICU team at your hospital:

chaplain – A person who provides spiritual support to NICU families.

charge nurse – A health care provider who has nursing training. The charge nurse makes sure that the NICU runs well. This nurse also oversees admitting babies to and discharging them from the NICU.

clinical nurse specialist – Also called CNS. A health care provider who has special nursing training in the care of children and their families. The CNS helps parents deal with their baby’s stay in the NICU. The CNS provides support and teaches parents about their baby’s health condition. The CNS is also involved in nursing staff education.

family support specialist – A person who provides information, help and comfort to families when their baby is in the NICU.

lactation consultant – A person who has special training to help women breastfeed.

medical geneticist – A doctor who has special training in diseases that are inherited and other birth defects.

neonatal nurse practitioner – Also called NNP. A health care provider who has special nursing and medical training in caring for sick babies. The NNP works with the baby’s neonatologist and other medical team members. The NNP can perform medical procedures and care for babies.

neonatal physician assistant – Also called PA. A health care provider who has special medical training in working with sick newborns. The PA works with the neonatologist, performs medical procedures and may direct your baby’s care.

neonatologist – A pediatrician (children’s doctor) who has years of additional medical training in the care of sick newborns.

neonatology fellow – A fully trained pediatrician who is getting additional medical training in the care of sick newborns.

occupational therapist - Also called OT. A health care provider who helps figure out how well babies feed and swallow and how well they move their arms and legs.

ophthalmologist – A doctor who has special medical training in the care of eyes and vision.

patient care assistant – Also called PCA. A NICU staff member who helps nurses change bed sheets, feed babies and prepare bottles.

pediatric cardiologist – A doctor who has special medical training in the care of a baby’s or child’s heart.

pediatric gastroenterologist – A doctor who has special medical training in the care of a baby’s or child’s digestive system. The digestive system is made up of organs and tubes that digest (break down) the food a baby eats.

pediatric neurologist – A doctor who has special medical training in the care of a baby’s or child’s brain and spinal cord. A spinal cord is a bundle of nerves that carries signals between the brain and the body.

pediatric pulmonologist - A doctor who has special medical training in the care of a baby’s or child’s lungs.

pediatric resident – A doctor who is getting medical training in taking care of babies and children.

pediatrician – A doctor who has special training in taking care of babies and children.

pharmacist – A person who has special training in how medicines work and the side effects they may cause. People get prescription medicine from a pharmacist. Pharmacists also provide medicines in the hospital and may visit patients with the NICU team.

physical therapist – Also called PT. A health care provider who looks at any movement problems babies have and how they may affect developmental milestones such as sitting, rolling over or walking. The PT helps a baby improve muscle strength and coordination.

registered dietitian – Also called RD. A health care provider who is trained as an expert in nutrition. The RD works with the NICU doctors and nurses to help make sure babies get all the nutrients they need. Nutrients, like vitamins and minerals, help the body stay healthy.

registered nurse – Also called RN. A health care provider who has nursing training. An RN in the NICU has special training in caring for sick newborns.

respiratory therapist — Also called RT. A health care provider who cares for babies with breathing problems. An RT is trained to use medical equipment needed to care for babies.

social worker – A person who is trained to help families cope with their baby’s NICU stay. The social worker can help families get information from health care providers about their baby’s medical conditions, give emotional support, help families work with medical insurance companies, and help plan for when their baby comes home.

speech and language therapist – A health care provider who has training to help people with speech and language problems. In the NICU, this therapist often helps newborns with feeding problems.

surgeon – A doctor who has additional specialized medical training in performing surgery and other procedures.

technician – A member of the hospital staff who may draw blood or take X-rays (a test that uses small amounts of radiation to take pictures of inside the body).

At one point or another, you may encounter many of the above people while your baby is in the NICU. They all work together to provide continuous care for your baby. Learn more about pediatric specialties and how they may help your baby.

Remember – you are also an important member of the NICU team, too. Don’t ever hesitate to ask questions or speak up for your baby.

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