Archive for the ‘Prematurity’ Category

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.

 

What if my baby needs surgery?

Friday, November 11th, 2016

mom-and-preemieThe idea of surgery is scary for anyone. But learning your premature baby needs to have surgery can be terrifying. Learning what you can expect may make things a little easier. The following information is adapted from Preemies: The Essential Guide for Parents of Premature Babies.

Ask a lot of questions

  • Talk to your baby’s neonatologist, the surgeon who will be operating, the anesthesiologist, and any other specialists who may be involved in your baby’s care.
  • Don’t be afraid to ask ANY questions that you have. It may be helpful to write them down as you think of them so that you don’t forget to ask when you see your baby’s doctors.  You may meet with someone unexpectedly and you will not want to miss the opportunity to get answers to your questions. Perhaps keep a notebook or pad in your handbag so you can jot down your thoughts as they cross your mind.
  • Also, take advantage of talking to the NICU nurses. They have cared for many preemies and understand your fears and concerns and can give you an idea of what is going to happen.

Surgery

  • Most premature babies are put under general anesthesia for surgery. This means that your baby will not be able to move during the surgery. She will not feel any pain or have any memory of the procedure.
  • If general anesthesia is used, your baby will not be able to breathe on her own and will need to be on a ventilator.
  • The surgical team will be monitoring your baby to make sure she is as comfortable as possible. During the surgery, your baby will be kept warm. The room temperature will be raised and she will be covered as much as possible. IV fluids may be warmed as well.

Recovery

  • Preemies need very special care after surgery. Immediately after surgery, your baby will remain in a recovery area while the anesthesia wears off.
  • The surgical team will then accompany your baby back to the NICU and update the neonatologists and bedside nurses.
  • It will take some time for the anesthesia to leave your baby’s body. This means she may be on a ventilator to help her breathe. If your baby didn’t have a breathing problem before surgery, she may be removed from the ventilator within hours or up to a few days after surgery. Babies who did have breathing problems will most likely need to be on a ventilator for a longer period of time.
  • Pain can delay healing and recovery, so your baby’s NICU team will be watching carefully for any signs that she is uncomfortable. The medication your baby receives to manage pain depends on a number of factors. Make sure you ask the doctors and nurses if you have concerns.

Asking questions and understanding what to expect before, during, and after your baby’s surgery, can help you feel more confident and better prepared for the procedure. You may also find it helpful to talk to other parents who have been through a similar experience with their preemie. Share Your Story, our online community, will allow you to connect with other moms and dads who can offer advice and support.

And, of course, we are here to answer any questions you may have. Send them to AskUs@marchofdimes.org.

 

 

 

 

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.

 

 

Understanding retinopathy of prematurity (ROP)

Friday, November 4th, 2016

baby-eyesRetinopathy of prematurity is an abnormal growth of blood vessels in the eye. It mainly affects babies weighing about 2¾ pounds (1250 grams) or who are born before 31 weeks of pregnancy. ROP affects about 14,000-16,000 babies in the United States each year. If your baby has ROP, getting treatment right away is really important. The disease can develop very quickly and cause vision problems or even blindness if it’s not treated.

What causes ROP?

During the last 12 weeks of pregnancy, the eye develops quickly. When a baby is born full-term, the growth of the blood vessels that supply the retina is almost complete. The retina then typically finishes growing the first few weeks after birth.

However, if a baby is born too early, the blood vessels may stop growing or not grow correctly. Scientists believe that the edge of the retina then sends signals to other areas of the retina for nourishment. This results in abnormal vessels growing. These abnormal vessels are fragile and can bleed easily and cause retinal scarring. If the scars shrink, they pull on the retina and cause it to detach.

Risk factors for ROP

Some things make a baby more likely than others to have ROP. They include:

  • Premature birth.
  • Apnea. This is when a baby’s breathing stops for 15 to 20 seconds or more.
  • Anemia. This is when the body doesn’t have enough healthy red blood cells to carry oxygen to the rest of the body.
  • Heart disease
  • Infection
  • Trouble breathing or respiratory distress
  • Slow heart rate (also called bradycardia)
  • Problems with the blood, including having blood transfusions.

Stages of ROP

ROP is classified into 5 stages:

  • Stage 1 – Mildly abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.
  • Stage 2 – Moderately abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.
  • Stage 3 – Severely abnormal blood vessel growth. Some of these babies get better without treatment, but others develop a condition called plus disease. This means the retina’s blood vessels get big and twisted. Plus disease is a sign that ROP is getting worse, but treatment can help prevent retinal detachment.
  • Stage 4 – Severely abnormal blood vessel growth and part of the retina detaches. These babies need treatment because part of the retina pulls away from the inside wall of the eyeball.
  • Stage 5 – Total retinal detachment. The retina is completely pulled away from the inside wall of the eyeball. Without treatment, a baby can have severe vision problems or blindness.

Treatment options

Laser or cryotherapy are the most effective treatments for ROP. Laser treatment uses a laser to burn and scar the sides of the retina. This stops abnormal blood vessel growth and prevents scarring and pulling on the retina. Cryotherapy uses a metal probe to freeze the sides of the retina, thereby preventing additional blood vessel growth.

Laser treatments and cryotherapy are done on babies with more advanced ROP, such as stage III.

Later stages of ROP require more intense treatments. Scleral buckle involves placing a silicone band around the white of your baby’s eye (called the sclera). This band helps push the eye in so that the retina stays along the wall of the eye. The buckle is removed later as the eye grows. If it isn’t removed, a child can become nearsighted. This means he has trouble seeing things that are far away.

In a vitrectomy, the doctor removes the clear gel in the center of your baby’s eye (called the vitreous) and puts saline (salt) solution in its place. Your baby’s provider can then take out scar tissue, so that the retina doesn’t pull. Only babies with stage 5 ROP have this surgery.

About 90% of infants with ROP fall into the mild categories and do not need treatment. But ROP can get worse quickly so early diagnosis and appropriate treatment (if needed) are very important. Your baby should be seen by a pediatric ophthalmologist. This is a doctor who identifies and treats eye problems in babies and children. The first eye exam should take place 4 to 9 weeks after birth, depending on when your baby was born.

You can read more about ROP on our website.

If your baby has ROP, visit our online community at Share Your Story to find a network of parents of babies with ROP. You can connect with them for support and comfort throughout your baby’s treatment.

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

Prematurity 101

Wednesday, November 2nd, 2016

Passing the time while your baby is in the NICUNovember is Prematurity Awareness Month. There are many facts that you probably already know about prematurity, but some that you may not. Here is quick cheat sheet on Prematurity 101. See if you can find the one statement that is false. (Answer is at the bottom – no peeking!)

Premature birth is the #1 cause of newborn death (1st 28 days of life).

Worldwide, 15 million babies are born preterm (before 37 weeks of pregnancy) and more than a million die as a result.

Babies who survive a premature birth often have lifelong health problems.

Preemies can suffer from cerebral palsy, vision and hearing loss, intellectual disabilities and learning problems.

Birth defects is the #1 cause of infant death (1st year of life).

We only understand about half of all the causes of premature birth.

Each year in the U.S., about 1 in 10 babies is born prematurely.

A baby’s life-long health problems can have a devastating financial effect on a family.

Babies born at 36 – 38 weeks of pregnancy may struggle with learning in school.

If your pregnancy is healthy, it’s best to stay pregnant for at least 39 weeks to give your baby’s brain and other organs the time they need to develop before birth.

If a baby is born prematurely and seems fine, he won’t have any problems as he gets older.

Which is the false statement?

They are all true except for the last statement. Just because a premature baby seems fine when he leaves the hospital doesn’t mean he won’t struggle with learning, experience developmental delays, or have disabilities as he gets older. About 1 in 3 children born prematurely need special school services at some point during their school years.

Learn more about the impact of premature birth on a family and society and how the Institute of Medicine (IOM) estimates the cost of premature birth in the United States to be $26.2 billion each year.

See our article to understand the emotional toll of prematurity on a family, especially as they face days, weeks or even months watching their baby fight for his life in the hospital.

What can YOU do?

Everyone can participate in Prematurity Awareness Month and World Prematurity Day on November 17th by visiting https://www.facebook.com/worldprematurityday. Help us light the world purple to spread awareness!

Join the conversations on Twitter – see our upcoming chats about prematurity here.

Have questions?  Text or email them 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

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.

 

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.

Infant mortality. These two words should never go together.

Wednesday, September 21st, 2016

emotional couple sittingInfancy should mark the beginning of life, not the end. Even though the rates of infant deaths are at an all-time low, far too many babies still die before their first birthday. For this reason, September is Infant Mortality Awareness Month – a time for us to share the sad fact that babies still die in infancy, and to help spread the word about how to fix this problem.

In 2013, in the United States, 23,446 infants died before reaching their first birthday, which is an infant mortality rate of 6.0 per 1,000 live births. Or, put another way, on an average day in the U.S., 64 babies die before reaching their first birthday.

What causes infant death? Can it be prevented?

“Preterm birth, or being born too early (before 37 weeks of pregnancy), is the biggest contributor to infant death,” according to the CDC. In 2013, about one third (36%) of infant deaths were due to preterm-related causes. Among non-Hispanic black infants, the rate of preterm-related death is three times higher than those of non-Hispanic white infants.

Other causes of infant mortality include low birth weight, birth defects, pregnancy complications for the mother, SIDS (sudden infant death syndrome), and unintentional injuries (accidents). Although the rate of infant deaths in the U.S. has declined by almost 12% since 2003, the death of any infant is still one too many.

Having a healthy pregnancy may increase the chance of having a healthy baby.

A woman can help reduce her risk of giving birth early by getting a preconception checkup, staying at a healthy weight, and avoiding alcohol and street drugs during pregnancy. Spacing pregnancies at least 18 months apart and getting early and regular prenatal care during pregnancy are also key parts of a healthy pregnancy.

It’s part of our mission

The March of Dimes is committed to preventing premature birth, birth defects and infant mortality. It is our hope that through continued research, we will have a positive impact on the lives of all babies so that fewer families will ever know the pain of losing a child.

If you or someone you know has lost a baby, we hope that our online community, Share Your Story, will be a place of comfort and support to you. There, you will find other parents who have walked in your shoes and can relate to you in ways that other people cannot. Log on to “talk” with other parents who will understand.

Even in the year 2016, “the U.S. has one of the highest rates of infant mortality in the industrialized world,” according to NICHQ, the National Institute for Children’s Health Quality.

The March of Dimes is working hard to make this fact history.

Have questions? Send them to our Health Education Specialists at AskUs@marchofdimes.org.

 

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.