Posts Tagged ‘prematurity’

NICU dad x 2 – the story of Jack and Josie

Friday, June 16th, 2017

Kyle Daddio and son JackIf there is one father who can talk about being a NICU dad, it is Kyle Daddio.Kyle Daddio and daughter Josephine

His son, Jack, was born at 26 weeks, more than 3 months prematurely. His daughter Josephine “Josie” came along three years later, born at 26 weeks as well. Both babies weighed one and a half pounds at birth.

Jack spent 121 days in the NICU, while Josie clocked in at 91 days.

Fortunately, Jack is doing well now, and Josie has recently gone home from the NICU to join the family.

In honor of Father’s Day, we asked Kyle to share his feelings about being a NICU dad, and to offer tips to new dads going through a similar experience.

What was the hardest moment you experienced in the NICU? 

February 13th, 2014, when our son Jack was 7 weeks old. It was the worst day of my life. It was a Thursday and, like I had been doing every day, came into the NICU early in the morning before work to read the newspaper with Jack while he was in his isolette. On Monday evening of that week Jack’s nurse had noticed that his belly started to become distended and was concerned. They began pumping him with antibiotics, running tests and getting x-rays.

The result was that he had Necrotizing Enterocolitis, NEC, which is an infection in the bowels. By Thursday morning his condition had not improved and the NICU staff was doing everything they could not to have to perform surgery. On that Thursday morning while I was reading the paper with Jack, he flat-lined. I was rushed out of the room while all the nurses and doctors ran in. His stomach was so distended that his lungs did not have enough room to fully expand, and it eventually became too difficult for him to breathe even on a ventilator. I was let back in the room about 30 minutes later to see Jack on an oscillator. I called my wife Katie to come down to the hospital and the doctors notified us that surgery was now more possible.

When he flat-lined again at 2pm, surgery was now necessary and the surgeon came in to speak with us. He notified us that given Jack’s small size (2/1/2 lbs) they were unable to know exactly how severe the infection was, and that this type of surgery at his size, given his current condition, had a success rate of less than 50%. A nurse then approached Katie and I with some holy water and said “I read on your form that you’re Catholic. You should baptize your son now.” We baptized him, and then followed the nurses and doctors as they wheeled Jack into the operating wing.

In the hall approaching the OR, Jack flat-lined for a third time. They resuscitated him and brought him into the OR for surgery. At that point we had no idea what was going to happen. We went back down to the NICU family room and sat silently waiting for a report from the OR. Many of the NICU nurses came and sat with us during that time, which was an incredible gesture. After nearly 2 hours, a call came down from the OR that the surgery was successful and Jack would be back down to the NICU for recovery in an hour or so. They removed his sigmoid colon and gave him a colostomy bag. The surgeon later told us that from a surgical standpoint it was a very good situation. The infection was focused on a small area that could easily be removed and should not have long standing effects on Jack’s GI tract. He is now a happy and healthy 3 1/2 year old and has had no resulting issues.

As a father and husband, how did you take care of yourself as you were taking care of your family throughout this difficult period?

My one advice I always tell other dads is you have to cry. You have to process your emotions at some point otherwise you will never get through it. For me, it was most mornings in the shower. On the nights that we actually slept, I would wake up in the morning and think “how am I going to get through another day of this. This isn’t how it was supposed to go.” Once those emotions hit you, you can’t push them down, you have to let them out, otherwise you’re not helping yourself and its going to begin to affect those around you.

The second thing you should do is use your support system. We were lucky enough to have our family near when Jack was born in NY, and they were absolutely amazing. When Josie was born in Colorado, family began jumping on flights the second they got the news. My father arrived the day before we delivered and my mom and brother arrived the day she was born. They made sure we had nothing to worry about other than being at the NICU with our kids, and they were very good about taking us out to get our mind off of everything. Taking us out for dinner, taking us to the movies, anything to step away from everything for a few hours.

Any tips for new NICU dads on how to support your wife or partner during this process?

My wife takes care of everything in the house, so anything I could do to shorten that list was help to her. With our son Jack, he was born while we were visiting our family in NY, so we were living at my aunt and uncle’s house for the nearly 5 months while he was in the NICU. It was an incredible gesture for them to have us but it wasn’t home. So I traveled back to Chicago to get some items that would help with our everyday lives.

With our second trip to the NICU with Josie, we had our 3 year old son Jack at home, so spending time with him so that Katie could be at the hospital with Josie was my main focus. Jack had school every day and therapy in the afternoon 2 days a week, and I was lucky enough to be able to work from home for the first 2 months of Josie’s NICU stay and help with Jack.

The most important focus for me was to make sure that Katie was getting as much time as she needed with our baby at the hospital.

What’s some advice you wish you’d had when your baby was born prematurely?

Knowing the possibilities. What are the chances that our child could be born prematurely? Why could they be born prematurely? If they’re born prematurely, what are the risks and things that can happen in week 1, week 2, etc.? We had no knowledge of anything dealing with prematurity. We had never been introduced to the March of Dimes or knew anything they did with prematurity research. It wasn’t on our radar and so we never thought about it. Our doctors never spoke about it and we never thought we were at risk so why would it ever happen to us? We joke now that after 212 days in the NICU between our two kids that we have a full year of nursing school under our belts. I have learned things and seen things that I would never have thought of prior to this experience.

We want to thank Kyle for sharing his story and giving his advice. We wish him, other NICU dads, and all fathers, a wonderful Father’s Day.

Please feel free to send a message to Kyle and his family or to share your NICU story with us.

Repeat lead tests are advised for certain children, pregnant women and breastfeeding moms

Wednesday, May 17th, 2017

blood-testsToday, the FDA and CDC issued a notice that some lead tests done by Magellan Diagnostics may be incorrect.

The FDA says “certain lead tests manufactured by Magellan Diagnostics may provide inaccurate results for some children and adults in the United States.”

If you have a child age 6 years old or younger, are pregnant or breastfeeding, speak with your healthcare provider or local health department to determine if retesting is needed.

The dangers of lead

Lead is a metal that comes from the ground, but it can be in air, water and food. You can’t see, smell or taste it. High levels of lead in your body can cause serious health problems for you and your family.

Children younger than 6 years of age can be severely affected by lead. It can cause developmental problems, hearing loss, vomiting, irritability, belly pain and weight loss. Very high levels of lead may even cause death.

Lead poisoning (high levels of lead in your body) can cause serious problems during pregnancy, such as premature birth, miscarriage, and high blood pressure. It can also cause fertility problems, mood disorders, headaches, muscle or joint pain, trouble concentrating, belly pain, anemia and fatigue in adults.

Where is lead?

Most lead comes from paint in older homes. When old paint cracks or peels, it makes dust that has lead in it. The dust may be too small to see. You can breathe in the dust and not know it.

Lead may be found in drinking water, at construction sites, in arts and crafts materials used to make stained glass, lead crystal glassware, and some soil.

For more information on lead poisoning, see our web article and the CDC’s information.

Bottom line

If you have a child age 6 or younger, or you are pregnant or breastfeeding, contact your healthcare provider to determine if a lead test should be repeated.

Have questions? Contact our health education specialists at AskUs@marchofdimes.org.

You can find more news on our News Moms Need blog.

 

Thank you to all nurses!

Wednesday, May 10th, 2017

Nurse holding babyIf your baby was in the NICU, you most likely spent a great deal of time with her team of nurses. Likewise, if you had a difficult pregnancy, a nurse was probably by your side assisting you the whole way.

Nurses are critical in the care of mothers and babies. Many families who have had a baby born prematurely or with a health condition have told us just how fantastic the nursing staff was at their hospital. Nurses are hardworking, compassionate, highly educated professionals who work around the clock to ensure that you and your baby get the care you need.

In honor of National Nurse’s Week we want to thank all of the nurses that have impacted March of Dimes’ families. In particular, we wish to congratulate the four nurses who won the March of Dimes Graduate Nursing Scholarship Awards.

To recognize and promote excellence in nursing care of mothers and babies, the March of Dimes offers several $5,000 scholarships annually to registered nurses enrolled in graduate programs of maternal-child nursing. The March of Dimes Dr. Margaret C. Freda Graduate Nursing Scholarship Award was established in 2016 to honor long-time March of Dimes National Nurse Advisory Council Chair, volunteer, and friend, Dr. Margaret Comerford Freda. This award is given each year to the highest scoring graduate nursing scholarship applicant. Congratulations to our winners!

Did you have an amazing nurse that took care of you or your baby? How did he or she impact your NICU stay?

Share your story and help us thank all nurses for their unending dedication and incredibly hard work.

 

New research links premature birth to mom’s risk of heart disease later in life

Tuesday, February 21st, 2017

preemie and momThis headline has raised concerns among women who have had a premature baby (birth before 37 weeks) – and for good reason.

In a published study, researchers analyzed data from more than 70,000 women to look at the association between premature delivery and future cardiovascular disease (CVD). They found that women who delivered a baby before 37 weeks gestation in their first pregnancy had a 40 percent greater risk of heart disease later in life, compared to women with term deliveries. This finding occurred even after accounting for pre-pregnancy sociodemographic, lifestyle, and CVD risk factors.

And there’s more.

Women who delivered before 32 weeks gestation had double the risk of CVD later in life compared to women with term deliveries.

So what does this mean for moms who gave birth early?

The results from the study are concerning, but researchers have stated that premature delivery may be an early warning sign of future heart problems, but not the cause of them. Factors such as pre-eclampsia and gestational diabetes, both of which can cause preterm labor, are already considered risk factors for future CVD. More research is needed to determine exactly how premature delivery and CVD are linked.

The March of Dimes funds research to help discover the causes of preterm labor and premature birth. In about half of cases, the cause is unknown. We hope that with our groundbreaking research, we will be able to help prevent premature birth and improve the health of mothers and babies throughout their lifetimes.

If you have questions or concerns about your future risk of CVD, speak with your health care provider.

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.