Posts Tagged ‘prematurity’

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.

 

Three quarters of a century young (yes – we’re 79 years old!)

Monday, December 19th, 2016

fdr-warm-springs-kidsIt’s that time of year, when magazines are full of stories and photos of the year in review, and people look back to take stock of their accomplishments. This post is taking it a step further…here is a celebration of our past 79 years!

Why the dimes? (we get this question a lot)

The March of Dimes was started in 1938 when Franklin Roosevelt’s personal struggle with polio led him to create the National Foundation for Infantile Paralysis. It was a time when polio was on the rise nationwide. The name for the fundraiser “March of Dimes” was coined by comedian and radio personality Eddie Cantor as a pun on a popular movie newsreel of the era, The March of Time. Cantor asked his radio audience to send dimes to the White House to help polio patients and support research. After billions of dimes were received, the organization became known as the March of Dimes. The end result of this effort was the development of the polio vaccines, which have almost completely rid the world of this disabling disease.

check in boxIt is very unusual for a nonprofit organization to fulfill its mission as completely as that of the March of Dimes. So, when the March of Dimes checked off the box on the successful development of the Salk and Sabin polio vaccines, we turned our focus to that of preventing birth defects and infant mortality. With thousands of birth defects on record, we’ve had our hands full.

Our work after polio

The March of Dimes has funded research looking for the underlying genetic causes of birth defects to help us better understand what can go wrong and hopefully how to prevent them. We’ve funded research into the development of surfactant therapy to treat breathing problems in premature infants, which has saved thousands of lives since 1990. We’ve successfully championed and promoted newborn screening so that more infants with devastating conditions are identified and treated in a timely manner; and we led the campaign to add folic acid to grain foods in the United States, thereby reducing serious birth defects of the brain and spine by 27%.

We began educating the public on how to have a healthy pregnancy by producing a robust website of articles, print materials, this blog, and using social media to help women understand what they can do to have a full-term, healthy baby. We began answering individual health questions from the public in 1996 and still continue to answer thousands of questions every year.

But we didn’t stop there.

Our work with babies, birth defects and infant mortality provided a natural transition into fighting premature birth, the number 1 cause of deathPassing the time while your baby is in the NICU among babies in the U.S. Nearly 1 in 10 babies is born prematurely. Despite the advances in neonatal medicine, many babies still die, and the ones who survive often face a lifetime of disability – from mild to severe. In short, it is simply something that we knew we needed to fight.

So, in 2003 we launched our Prematurity Campaign. And in 2011, we launched the first of five prematurity research centers, each one staffed by the best and brightest scientists, and each one focused on a different aspect of prematurity. The best part of this 5-pronged approach is that the researchers all talk to one another and collaborate, encouraging synergy. Our goal is to be as successful with ending prematurity as we were with eliminating polio.

We also continued in the quest to allow folic acid to be added to corn masa flour in the U.S., and…drum roll please…we were successful this year! This is very important for the Hispanic community as corn masa flour is a staple for many Hispanic families. Fortifying corn masa flour products such as tortilla chips, tacos, and tamales, with folic acid will help prevent more devastating neural tube birth defects like Spina Bifida.

Wait…there’s more…

In the meantime, another related mission has surfaced – stopping the Zika virus. The devastating effects that Zika can have on a developing baby are well documented (microcephaly, congenital Zika syndrome, and developmental delays).

The March of Dimes led a coalition of almost 100 organizations to educate Congress about the dangers of Zika and was successful in the passage of federal funding to combat the virus. We continue to raise awareness with our #ZAPzika campaign to let women know how to protect themselves. By working with the CDC, we‘re educating the public about this virus so that pregnant women can protect themselves and their babies from Zika.

Yes. We’ve been very busy. The past 78 years have gone by quite fast.

Is there anything else in our future? Glad you asked!

A new March of Dimes President.

With the start of 2017, we will be under the leadership of President, Stacey D. Stewart, MBA, a woman of experience, intelligence, creativity and integrity. We’re so excited to welcome her.

The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

We are confident that under the leadership of Ms. Stewart, we will once again check off the box on a mission accomplished.

 

 

Can the benefits of kangaroo mother care last into adulthood?

Tuesday, December 13th, 2016

kangaroo-care-21Parents who have had a baby in the NICU are familiar with kangaroo care or skin-to-skin care. Kangaroo care is a way to hold your baby so that there is as much skin contact between you and your baby as possible. It has wonderful benefits for parents and preemies. A new study shows that the benefits of an intensive form of kangaroo care, kangaroo mother care (KMC), may last into adulthood.

Kangaroo mother care was initially developed in Bogota, Columbia in the late 1970s. It was initiated in response to a shortage of incubators and a high rate of severe hospital infections. KMC involves continuous skin-to-skin contact, exclusive breastfeeding (or nearly exclusive), and timely (early) discharge with close follow-up. At the time, this was a revolutionary idea and very different than the typical practice of limited parental access to premature and low-birthweight infants. From 1993-1996 a study was conducted to scientifically prove the benefits of kangaroo mother care. It found that the survival, growth, development, and other selected health-related outcomes were equal to or better than those of infants cared for in a traditional manner.

The same researchers have now done a follow-up study of these children to see if the benefits of KMC have lasted into adulthood. They again compared the groups who had kangaroo mother care vs. traditional care. The researchers found that the KMC group had “significant, long-lasting social and behavioral protective effects 20 years after the intervention.” They were less aggressive, less impulsive, and less hyperactive than the group that did not receive KMC.

More studies are needed to help better understand how KMC influences long-term outcomes. But we know that kangaroo care has immediate benefits for both parents and babies while they are in the NICU. Kangaroo care may help your baby:

  • Keep his body warm
  • Keep his heart rate and breathing regular
  • Gain weight
  • Spend more time in deep sleep
  • Spend more time being quiet when awake and less time crying
  • Have a better chance of being able to breastfeed

And, kangaroo care may help you:

  • Make more breast milk
  • Reduce your stress
  • Feel close to your baby

Kangaroo care can be beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby.

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

Helping your baby thrive in the NICU

Friday, December 2nd, 2016

This video clip contains great information on nurturing your baby in the neonatal intensive care unit (NICU). In the video, real NICU parents describe different ways to bond with your baby while in the hospital, including skin-to-skin or kangaroo care.

 

 

For more helpful information about caring for your baby in the NICU, please visit our website. Learn about resources and support that can help you and your family while your baby’s in the NICU. Also, you can go to Share Your Story, the March of Dimes online community for families to share experiences with prematurity, birth defects or loss.

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

Sometimes, love comes early – Pampers is offering a touch of love for those who do

Monday, November 14th, 2016

Kangaroo care Skin-to-Skin-223x300Today we welcome guest blogger Amy Tally, Senior Scientist, Pampers Hospital Diaper Development, P&G.

At Pampers, we believe every touch of love matters to the health and development of babies, especially the most vulnerable ones. That is why we’ve joined forces with the March of Dimes under the Pampers Touches of Love campaign this fall to celebrate all babies, especially those in the NICU, and those who care for them.

As part of this campaign, through World Prematurity Day on November 17, we’re asking everyone to show us all the ways that you give babies touches of love (from a hand hold or kiss on the forehead to wrapping your baby in a blanket chosen especially for her or him). For every #touchesoflove moment shared with @Pampers on Twitter & Facebook and @PampersUS on Instagram, we’ll make a $1 donation to the March of Dimes.*

One of the main reasons for our Touches of Love campaign was to underscore the importance of another major development from Pampers. We’ve worked closely with hospitals, pediatricians and nurses for 40 years, and as my colleagues and I met with hundreds of nurses over the past three years, they shared that current preemie diapers do not properly fit the smallest premature babies, and they were having to cut or fold the diaper or improvise ways to make it fit.

This is why we recently introduced our smallest diaper yet – the new Pampers Preemie Swaddlers Size P-3 diaper– because of all the challenges faced by babies who are born prematurely, a properly fitting diaper shouldn’t be one of them. Designed in partnership with NICU nurses, this diaper caters to the unique needs of babies weighing as little as one pound (500 grams) – to offer them a small touch of love. From the narrow core which offers Pampers excellent protection and allows their legs to lay comfortably and be optimally positioned, to the Absorb Away Liner™ that pulls away wetness and loose stools, a common side effect of antibiotics that premature babies are given, the new size P-3 diaper was created with the care and comfort of these tiny, premature babies at the forefront every step of the way. These size P-3 diapers are currently available in select hospitals in the United States, and will be available to hospitals across the U.S. and Canada before the end of 2016.

Being part of the development team, I can tell you that the creation of the new Pampers Preemie Swaddlers P-3 diapers was truly a labor of love. We wanted to make sure that our new diaper wrapped the tiniest babies in a gentle, loving touch because we understand that for premature babies, touch is not only a sign of love, but also a catalyst for survival and growth.

*Up to a maximum of $5,000. In addition, Pampers has made a donation of $100,000 in support of the Touches of Love campaign.

The March of Dimes does not endorse specific brands or products.

 

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.

 

 

It’s Prematurity Awareness Month – Come chat with us!

Monday, October 31st, 2016

parents in the NICU

We have several Twitter chats scheduled in November, in honor of Prematurity Awareness Month.

Please join us:

Wednesday, November 2 at 1pm ET with neonatologist Dr. Suresh of Texas Children’s Hospital. Use #preemiechat

Topic:  Prematurity – causes, complications, and coping in the NICU

 

Wednesday, November 9 at 2pm ET with Mom’s Rising. Use #WellnessWed

Topic: Can your preconception health reduce your chances of giving birth early?

 

Tuesday, November 15th at 2pm ET with Genetic Alliance and Baby’s First Test. Use #preemiechat

Topic: Is prematurity caused by genetics? Can it run in families?

 

We hope to see you on Twitter!

For questions or more information about these chats, text or email AskUs@marchofdimes.org

birth announcement

Infant loss affects the tiniest family members

Friday, October 14th, 2016

Loss affects entire families every day, in many different ways. In honor of Pregnancy and Infant Loss Awareness Day tomorrow, here is the heartfelt story of a family who lost their precious daughter Madeline, due to complications from prematurity.

We welcome guest blogger Heather as she shares the ripple effects of losing Maddie, as seen through the eyes of one of her children.

Maddie“Mom, we were counting our family members in school today.” The Kindergarteners have been doing a lot of exercises where they “find numbers” in the world, like counting steps, trees, etc.

“That’s fun. Do any of your classmates come from big families?”

“Yep! I didn’t know exactly how many to count. There’s four of us, but five if you count Rigby (our sweet dog). Six if Maddie hadn’t died.”

– – –

In our house, we don’t make a big deal about Madeline. We talk about her when she comes up naturally, which means sometimes we discuss her multiple times a day, and sometimes we’ll go several days without mentioning her.

I, however, say her name every day, even if it’s just to myself. I wonder what she’d be like, who her friends would be, which classroom she’d be in. I think about her without even thinking about it. Missing her has become one of my body’s automatic functions, like breathing.

Protecting myself has become automatic, too. I rarely bring her up with strangers anymore. I know many loss moms never hesitate to mention all of their children when given the chance, but I don’t. Basic questions like, “Oh, do you have other kids?” don’t hurt me the way they used to. I don’t feel like I am denying her when I don’t mention her. Instead, I am saving myself the agony of having to answer additional questions, having to relive it, having to watch a person I don’t know process this complicated answer to their simple question. I know about her, the people who love us know about her, and our future friends will one day know about her, too.

Of course, the people who surround Annabel at school every day aren’t strangers, not anymore. But this is her domain, so I follow her lead. Her drawings are of the four of us and Rigby. She said that one time she mentioned she had an older sister, but her friends were confused. I explained to her why they might be confused, and I reminded her that she only has to say what she is comfortable with – it’s okay to talk about her sister, and it’s okay not to.

“I told my teacher four or five or six, and I counted everyone for her.”

“…and what did she say?”

“She said all of my answers were right!”


Maddie’s story

After 28 weeks and 6 days of an extremely rocky gestation, Madeline Alice was born on November 11, 2007. She weighed three pounds one ounce, and was 15 3/4 inches long. Because she was over 11 weeks premature, she was rushed to a Level III Neonatal Intensive Care Unit. She spent 68 long days there until the wonderful January afternoon we brought her home.

Maddie’s prematurity left her lungs scarred, but her amazing happiness remained unscathed. She lit up the lives of everyone she met (and countless more she didn’t) with her bright eyes, infectious laugh, and gigantic grin.

On April 6th, Maddie came down with a severe respiratory infection. She left the world suddenly and unexpectedly April 7, 2009.

We miss her with every fiber of our being.

News Moms Need thanks Heather for giving us a glimpse into how deeply the effects of loss are felt, and how it affects every family member for a lifetime. You can read more about Heather and her family here.

Give them tomorrow

Wednesday, September 7th, 2016

Give them tomorrowToday is an important one here at the March of Dimes.

Today we launch our new campaign, Give them tomorrow, to raise awareness and funds to fight birth defects and premature birth, the #1 killer of babies in the United States.

This campaign is different. You have the opportunity to help give a fighting chance for every baby by:

  • sending a message of hope to a family of a baby in the NICU (newborn intensive care unit), which the March of Dimes will hand-deliver.
  • sharing your baby’s first milestones at #babysfirst with our social community.
  • engaging with us on World Prematurity Day, November 17th to raise awareness and learn about the cutting edge prematurity research that saves babies’ lives.

We have set a goal to generate 380,000 actions to save babies’ lives, to symbolize the 380,000 babies born too soon each year in the U.S. That’s 1 in 10 babies born prematurely (before 37 weeks of pregnancy). This rate is higher than most other high-resource nations.

Even babies born just a few weeks too soon can face serious health challenges and are at risk for lifelong disabilities including breathing problems, vision loss, cerebral palsy, developmental delays and intellectual disabilities. The problem of prematurity involves babies being born too soon and often with birth defects and complications that affect them for life — that’s if they make it through the first critical days and weeks. There are so many challenges for these babies and their families from day one that tomorrow is a dream.

Give them tomorrow is supported by our corporate partners who are committed to saving babies’ lives. Partners in 2016 include Mud Pie, Philips Avent, Famous Footwear, ALEX AND ANI, ALDI, Bon-Ton, and Anthem Foundation.

Won’t you join us today as we make a difference in the lives of all babies?

Together we can give them tomorrow by doing something today.

 

We're in this together

 

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. For more than 75 years, moms and babies have benefited from March of Dimes research, education, vaccines, and breakthroughs. For the latest resources and health information, visit marchofdimes.org and nacersano.org. You can also find us on Facebook or follow us on Instagram and Twitter.

Preemies need vaccines, too

Wednesday, August 31st, 2016

Special thanks to the CDC for sharing this post with us in honor of National Immunization Awareness Month.

NICU babyHaving a premature baby can be stressful, and as a parent of a preemie, you may have many questions about keeping your baby healthy. One of those questions may be about whether or not you should follow the Centers for Disease Control and Prevention’s (CDC’s) recommended immunization schedule for your baby, or if you need to adjust vaccine timing based on your baby’s early arrival.

The CDC and pediatricians agree that preterm babies, regardless of their birth weight and size, receive most vaccines according to their chronological age (the time since delivery). In fact, vaccinating as early as possible is important, because according to The Children’s Hospital of Philadelphia, preterm babies don’t get as many maternal antibodies through the placenta as full term babies do. This means they are more vulnerable to diseases during their first months of life. The recommended immunization schedule protects against 14 of these diseases, which can be very serious for babies.

Vaccines are safe for preemies, but like any medication, vaccines can cause side effects. The most common side effects are mild (such as redness where the shot was given) and go away within a few days. The side effects associated with vaccines are similar in preterm and full term babies.

There is one exception to following the recommended schedule — the hepatitis B vaccine, which is typically given at birth. This vaccine might not work as well in preterm babies weighing less than 70.5 ounces (2,000 grams). If a baby weighs less than 70.5 ounces and the mother is not infected with hepatitis B, the baby should receive the first hepatitis B dose one month after birth. If the mother is infected or her status is unknown, the baby should receive the vaccine at birth, but it should not be counted as part of the three-dose hepatitis B vaccine series. Then one month after birth, the baby should begin the full three-dose series.

The rotavirus vaccine may also be given differently to preterm babies. Babies usually get the first dose of the vaccine at 8 weeks, although vaccine is licensed for use as early as 6 weeks of age. CDC recommends that if a baby 6 weeks or older has been in the hospital since birth, the rotavirus vaccine should not be given until discharge.

Preemies are vulnerable to diseases and serious infections. Vaccinating according to the recommended schedule is one of the best ways to keep them healthy. For more information, talk to your child’s doctor or visit CDC’s vaccine website for parents.

Have questions? Send them to our health education specialists at AskUs@marchofdimes.org.