Posts Tagged ‘prematurity’

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

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

Reduce the risk of SIDS in your baby

Monday, October 5th, 2015

back to sleepEach year 3500 infants die suddenly and unexpectedly in the U.S. These deaths are called sudden unexplained infant deaths (SUID). Most of them happen while the infant is sleeping in an unsafe environment.

SUIDs are reported as one of three types of infant deaths:

  • Sudden infant death syndrome (SIDS)
    SIDS is the sudden death of an infant less than one year of age that cannot be explained. It can happen without warning to a baby who seems healthy. One reason a baby is more likely to die of SIDS is if he is  born prematurely (before 37 weeks of pregnancy) or with low birthweight (less than 5 pounds, 8 ounces).
  • Unknown cause
    This is the death of an infant less than one year of age that cannot be explained because an investigation was not conducted. Therefore, cause of death could not be determined.
  • Accidental suffocation and strangulation in bed
    Suffocation can occur if an infant is put to sleep on soft bedding or a pillow. It can also happen when a person rolls on top of an infant or when he becomes wedged between two objects such as a mattress and the bed frame. Strangulation can happen when an infant’s head and neck become caught between two objects such as crib railings.

What can you do?

October is Sudden Infant Death Syndrome Awareness Month. It is important to understand your baby’s individual risk factors, and learn safe sleep strategies including:

  • ALWAYS, put your baby to sleep on her back, in a crib without bumpers, blankets, stuffed toys or loose bedding.
  • Do not smoke. Babies of parents who smoke are more likely to die of SIDS than other babies.
  • Give your baby a pacifier for naps and at bedtime.
  • There are many myths about SIDS – learn the facts.
  • Place your baby in her own bassinet or crib to sleep near your bed, but do not share the same bed. 

The good news is that SUIDs has significantly declined – from 130.3 deaths per 100,000 in 1990 to 39.7 deaths per 100,000 in 2013 – as a result of safe sleep messaging. See the American Academy of Pediatrics’ safe sleep recommendations and the National Institute of Child Health and Human Development’s Safe to Sleep campaign.

Have questions? Text or email us at

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

March of Dimes NICU Family Support® program offers services to over 90,00 families every year

Wednesday, September 23rd, 2015

Nurse and mom in NICUNow in its 14th year, this unique program offers comfort, support and information to families who have a baby in the NICU (neonatal intensive care unit) at over 120 hospitals across the U.S.

Babies in the NICU may have been born too small, too soon, or with a medical condition that requires intensive care. Throughout the NICU experience, parents can be involved in their baby’s care in a variety of important ways. The March of Dimes developed the NICU Family Support program to help support NICU families during their baby’s time in the NICU. The program also educates NICU staff about the best ways to support babies, families, and each other.

Specialized materials for long and short NICU stays

Hospitals with a NICU Family Support program are able to offer their families relevant, NICU-specific materials including a keepsake booklet, a guide for parenting in the NICU, and a NICU guide and glossary. As part of the program, hospitals also receive information for extended family members such as grandparents and siblings.

There are also materials for families whose babies stay in the NICU less than 14 days, a common experience that can also be very frightening and stressful.

Families can access March of Dimes NICU resources online from any device with an internet connection, in both English and Spanish. Topics include medical care, understanding equipment, how to hold and feed your baby in the NICU, becoming an informed parent, and many other important subjects.

Hospital staff education

NICU Family Support also provides ongoing education for hospital staff. This education focuses on best practices in supporting families, and the benefits of appropriate family-centered care for NICU babies at every stage of development. Training for staff is based on best practices and evidence based care, to help support them in their important role.

Parent to Parent online community

Support from other parents can be found on our online community, Share Your Story where current and “graduate” NICU parents reach out to help guide and comfort one another. Parents can log on and post a comment or question to join this warm and inviting group.


Have questions? Send them to

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


Priceless advice from a NICU nurse and mom

Tuesday, September 15th, 2015

Jessica sees her preemie Lily In honor of Neonatal Nurses Day, we talked to Jessica Zackula RNC, BSN, a NICU nurse and NICU mom. Jessica experienced the ups and downs of giving birth early and having her baby hospitalized in the NICU for three weeks. And, as a NICU nurse, she is aware of what parents need to know when their baby is in the NICU. Here is her advice for NICU parents:

“As a NICU nurse and NICU mom, here are 3 things I wish every parent knew walking through the doors of the NICU:

1.  Speak up for your baby.

  • You know your baby better than anyone in the NICU. You are an important part of your baby’s care team. If you have questions, be sure to ask them.

2.  Do the best you can with pumping and breastfeeding.

  • Breastmilk is one of the most important things you can give your baby while he or she is in the NICU. Even if your baby is too young to breastfeed, your baby can still receive breast milk through a feeding tube. Seek help on how to pump breastmilk.

3.  Take care of yourself; lean on other NICU parents to help get you through tough times.

  • No one knows the NICU journey better than another NICU parent.
  • It is important that you take time to care for yourself during the sometimes rocky ride through the NICU.
  • You and your baby will benefit from being well rested, drinking plenty of water, and eating healthy foods.”

Jessica realizes the value of parents working together with the NICU staff. Clear communication is key in understanding what is happening to your baby. Being an informed parent allows you to look out for your baby’s best interest and be her advocate.

More about Jessica…

Jessica Zackula RNC, BSNJessica Zackula RNC, BSN has been working as a Neonatal Intensive Care Unit (NICU) nurse at MultiCare Tacoma General Hospital in Washington, since 1999. Her daughter, Lily, was born at 32.2 weeks gestation in 2004, and was a patient in Jessica’s NICU unit for 21 days. Lily left the NICU to go home weighing just 3 pounds 5 ounces. Today, she is a healthy, bright 11 year old, who just began the 6th grade.

In 2010, Jessica was promoted to nursing leadership of the Tacoma General Hospital NICU, where she currently remains as the Clinical Nurse Manager. She is passionate about continuous quality improvement and creating an optimal experience for families in the NICU through integrated, family centered care.

In honor of Neonatal Nurses Day

We want to thank Jessica and every NICU nurse, for their dedication and tireless efforts to help fragile, sick babies. We know that their exceptional care makes a difference for each and every baby in the NICU.

NICU parents can reach out to other parents on Share Your Story, the March of Dimes online community, where you will find comfort and support. Also, we invite you to browse News Moms Need for other helpful posts on prematurity and life in the NICU.

Have questions? Text or email


The survival rates of extremely premature babies are improving

Friday, September 11th, 2015

NICU preemieAdvances in treatment options may be helping to increase survival rates and reduce the number of complications for extremely premature babies, according to a new study published in the Journal of the American Medical Association.

The study looked at 34,636 infants born between 22-28 weeks over 20 years (1993-2012). The researchers found that the overall rate of survival for premature babies born between 22-28 weeks increased from 70% in 1993 to 79% in 2012.

According to the researchers, “Survival rates remained unchanged from1993 through 2008. After 2008, trends in survival varied by gestational age.”

  • For babies born at 23-weeks, the survival rate rose from 27% in 2009 to 33% in 2012.
  • For babies born at 24-weeks, the survival rate rose from 63% in 2009 to 65% in 2012.
  • There were smaller increases for babies born at 25 weeks and 27 weeks.
  • There was, however, no change reported for babies born at 22, 26, and 28 weeks.

The researchers also looked at how many babies survived extreme premature birth without developing major neonatal health problems. They found that the rate of survival without major complications increased approximately 2% per year for babies born between 25-28 weeks.  However, there was no change in survival without major complications for babies born between 22 to 24 weeks.

The authors of the study also observed changes in maternal and infant care which may have contributed to the increased survival rates. For instance, the use of corticosteroids prior to birth rose to 87% in 2012 (vs. 24% in 1993). Corticosteroids help to speed up your baby’s lung development. While most babies were put on a ventilator (a breathing machine that delivers warmed and humidified air to a baby’s lungs), continuous positive airway pressure (CPAP) without ventilation increased from 7% in 2002 to 11% in 2012. And the rate of late-onset infection decreased for all gestational ages.

“For parents of babies born very early — 22-28 weeks — these data are showing improvements in outcome. We are gratified by the progress, but there is so much more that could be done if we could understand what causes premature labor and birth,” said Dr. Edward McCabe, Chief Medical Officer for The March of Dimes.

“Our focus is on preventing premature births and we are making excellent progress,” he said. “We have saved hundreds of thousands of babies from premature birth since the rate peaked in 2006.”

You can read more about our Prematurity Campaign and our Prematurity Research Centers on our website.

Questions? Email or text us at

Having a baby in the NICU can be stressful for siblings

Wednesday, June 24th, 2015

IMG_9387Giving birth early and having a baby in the NICU is stressful for parents; but what is sometimes overlooked is how upsetting it is for the preemie’s siblings.

A change in routine is upsetting to children. Having mom and dad away from home for long periods of time can turn even the most well-adjusted child upside down. If your child has not been able to visit her sibling or she does not have a solid grasp on what is happening, the uncertainty of the situation can cause distress. What can you do to ease the anxiety that is trickling down to the smallest members of your family?

  • Talk to your child at a level that she can understand. There are children’s books that explain prematurity. These books can make the explanation much easier for parents. Check with your local library for appropriate titles.
  • Reassure your child that nothing she did or said caused her sibling to be born early. Some kids may blame themselves or feel guilty.
  • Your child might be very worried and fear that the baby may never come home. As best you can, let your child know that you and the doctors and nurses are taking good care of her baby sibling, just as they would take care of her.
  • Understand the signs of distress in your child. Any regression (loss) in developmental progress (such as bed wetting, not sleeping through the night, acting out or being excessively attached to you), may indicate that your child is feeling the negative effects of the situation.
  • If possible, have your child visit your baby in the NICU.
  • In the Preemies book, you can read about these and other ways to minimize the anxiety that having a baby in the hospital can have on your family.

Do you have any tips to share on how to help your older children got through the stress of having a baby sibling in the NICU? Please share.

Have questions? Send them to

View other posts in the series on Delays and Disabilities: How to get help for your child.


Our fifth prematurity research center has launched!

Monday, June 15th, 2015

AA010686The new collaborative, which launched earlier this month includes the University of Chicago, Northwestern University Feinberg School of Medicine, and Duke University School of Medicine. The researchers will work to identify genes that help to make sure a woman has a full-term pregnancy. They are also looking at how stress, including how a woman’s lifelong exposure to discrimination or poverty, may influence those genes.

The March of Dimes has invested a total of $75 million over 10 years towards five research centers. Each center will focus on different aspects of the causes of preterm birth in the hopes of preventing women from going into labor too early. Babies born too early can face serious long-term health problems.

Our first center opened at Stanford University School of Medicine in California in 2011, followed by the Ohio Collaborative, a partnership of universities in Cincinnati, Columbus and Cleveland, Ohio, which launched in 2013. In November of last year we launched our third and fourth centers at Washington University, St. Louis Children’s Hospital in Missouri and at the University of Pennsylvania respectively.

All five of our prematurity research centers will work together and share findings to determine the cause of preterm birth so that more babies can have a healthy start. Learn more about our newest research collaborative here.

Birth announcements for your preemie

Monday, June 1st, 2015

birth announcementThe birth of your baby is such an important and joyous time in your life. Many moms want to commemorate the birth by sending out birth announcements to friends and family. I remember when my nephew was born, my sister-in-law put together a small photo shoot in her living room in order to have the perfect picture to include on the birth announcement. Many parents, however, don’t anticipate giving birth early and having a baby in the NICU. If your baby was born weeks or even months ahead of schedule, how should you announce your baby’s birth?

As your baby is being cared for in the NICU, you may feel like you are riding an emotional rollercoaster. You don’t have to send out birth announcements right away. Your first priority is taking care of your baby (and yourself). Birth announcements are typically mailed out anywhere from a few days to a few months after the arrival of your little one, so wait until your baby’s health stabilizes and you feel ready to focus on it.

What if your baby was born weighing 3 pounds, or less – should you include the weight on the announcement?

This is totally up to you. If you feel uncomfortable sharing that information on a birth announcement, you don’t need to include it. Many parents of full-term babies often leave their baby’s weight off the announcement. You can include your baby’s name and date of arrival, which are the details family and friends really want to know.

Your baby’s birth may not have gone as planned, but as your rollercoaster ride starts to slow, you will want to give your child the welcome celebration that she deserves.

Preemies and asthma – how to help your child

Wednesday, May 20th, 2015

asthma inhalerResearch has shown that premature birth (before 37 weeks) can cause a baby to have lung and breathing problems such as asthma, a health condition that affects the airways.

Asthma causes repeated episodes of wheezing, breathlessness, chest tightness, and nighttime or early morning coughing. It can be mild to severe. If your child has asthma, he is far from alone. According to the CDC, 6.8 million children have asthma, or 1 in 11 children.

Asthma can be controlled by taking medicine and avoiding the triggers that can cause a flare-up. It is important to remove the triggers in your child’s environment that can make asthma worse.

What causes asthma symptoms?

Many children with asthma have allergies. Coming into contact with an allergen can set off asthma symptoms. Common allergens are: dust mites, animal dander, mold and pollen.

Other triggers include air pollution, smoke, exercise and infections in the airways. Asthma symptoms may be brought on by a change in air temperature, perfumes and odors from cleaning products.

How can you help your child?

Understand your child’s asthma condition as much as possible. Learn how to minimize triggers and know what to do in the event of an asthma flare-up. The American Academy of Pediatrics (AAP) offers ways to avoid asthma triggers or irritants.

What are common treatments?

Depending on how mild or severe your child’s asthma condition is, treatments will vary. Often quick relief medicines (such as inhalers) will be prescribed to help stop an asthma flare-up. These medicines help to open the airways making breathing easier.

Long term treatments include medications that aim to keep the lungs from becoming inflamed. These medications help prevent flare-ups, and need to be taken even when there are no asthma symptoms.

What about childcare and school?

The AAP has helpful info on the various treatments available and offers management tips for different situations such as at home or school.

The CDC has recommendations on how you can make your child’s childcare or school environment as successful and asthma free as possible. In the United States, there are laws to help your child at school. For example, a 504 plan might be needed to help your child access his education through reasonable accommodations.

What should you ask your child’s health care provider?

Ask for an individualized asthma action plan. This is a written plan to help your child avoid his particular triggers and respond to asthma symptoms. The plan aims to give you more control of your child’s condition, and hopefully, to avoid emergency situations. The plan can be used anywhere – at home, day care or school.

How can your child understand his asthma?

There are books, videos and podcasts available that you can explore with your child to help him learn about his condition (if he is old enough to understand):
How to use your asthma inhaler video shows kids using an inhaler properly.
Dusty the asthma goldfish and his asthma triggers is a downloadable fun book that helps kids and parents understand triggers.
• The CDC’s Kiddtastics podcast is another way for parents and kids to learn about managing symptoms.
• Here are other resources specifically geared towards kids. Check them out.

Bottom line

No two children are alike, and each asthma case is unique. As with any health condition, be sure to speak with your child’s health care provider about all of your concerns. With knowledge, medical advice and an action plan, your child can live a very full and active life.

Have questions? Send them to

Read more about how to help your child with a delay, disability or health condition.