How employer maternity leave policies can hurt those who need it most

It is well established that the US has some of the worst maternity leave policies in the world.  While most countries offer paid leave to new mothers, the US and Papua New Guinea are the only two countries that don’t.  Contrary to popular belief, employers, in large part, have not stepped in to provide this benefit.  Only 12% of workers get access to paid leave through their employers.  To make matters worse, the institutions involved in regulating and implementing maternity leave generally determine their policies around the erroneous assumption that most births occur without significant complications and with an expectation that the baby will be born full-term.  In reality, approximately 11% of births in the US are premature births, and up to 9 out of 10 births experience some sort of complication.  Despite these figures, maternity leave policies even at the most generous companies typically leave little room for exceptional cases that don’t fit neatly into the problem-free birth story.

When my son was born 16 weeks early in 2013, I anticipated my son having a long hospital stay, so I decided to return to work three weeks after his birth so that I could save my maternity leave for when he came home.  While my son was in the hospital fighting for his life, I went to work each day, left promptly at 5pm to spend the evening at my son’s crib side, and maintained a schedule of pumping every three hours, even in the middle of the night, to provide breast milk for my son so that he could receive the health benefits of my milk.  Needless to say, this was an extremely stressful time in my life.

My employer at the time had a policy that provided new mothers with up to 12 weeks of partially paid leave as long as the employee had been with the company for at least a year by the time the leave commenced.  Their policy also stated that in order to receive the cash benefit, the leave must be taken continuously within 12 weeks of the baby’s birth.

My son stayed in the hospital for 140 days – or four and a half months – before coming home.  Despite the fact that I had by then achieved the requirement of 12 months of employment with the company, I was not eligible for paid leave when my son came home because he was older than 12 weeks old by then.  In order to receive any compensation during my time off, I was required to use my remaining vacation days, which inevitably meant that I would have limited flexibility to take my son to his numerous doctor’s appointments once I returned to work.  Like many other preemies born as early as he was, my son came home on oxygen, an apnea monitor and a list of ten specialists that he was required to see for regular follow-up.  On top of that, ongoing co-pays for doctor visits, extra equipment fees and the standard costs of caring for a baby meant that I needed my pay then more than ever.

Just as most pregnant women do, I fully expected to have a “normal” pregnancy and birth.  My son’s prematurity was unexpected and due to no fault of my own.  The truth is, women can experience a number of complications during birth that may lead to an extended hospital stay for either the mother or baby.  In any of these cases, the mother would be forced to accept a reduced cash benefit or no benefit during their maternity leave, according to my former employer’s policy, even if they had met the one year of employment requirement.  Surprisingly, I later found that many companies have similar clauses in their maternity leave policies.

Presumably, the reason that my former employer included the clause in their policy that required the baby to be less than 12 weeks old for paid leave eligibility is to prevent new mothers from delaying their leave to get around the prerequisite of 12 months of employment with the company.  Anyone who has ever had a baby or cared for a newborn knows how unnecessary such a policy is.  Unless the new mother has substantial financial resources or a set of ready caregivers at her disposal – in which case, paid maternity leave would arguably be less urgent anyway – a newborn coming home necessitates one or both parents taking leave.   Delaying leave would mean diminished bonding with the newborn after having just gone through hours of labor or abdominal surgery to give birth, no time for physical or emotional recovery, and would make breastfeeding nearly impossible.  The only reasonable situation in which such a delay in taking leave would make sense is an extended hospital stay for either the mother or baby.  By not adequately accounting for plausible exceptions to a normal birth, the 12 week old cutoff, then, only serves to penalize those who need the benefit of paid maternity leave most.

Maternity leave policies are intended to provide safeguards for new parents, allowing them to take time off to care for a newborn without fear of losing their job, and for those working for employers that offer paid maternity benefits, to take that leave without significant financial disruption.  Isn’t it only fair, then, that companies be obligated to provide families that not uncommonly experience birth complications the same benefits that families which experience uncomplicated births receive?

Advice to friends and family on how to talk about prematurity or provide support

By Mark Axmacher

Learning that your baby is coming early could be the most difficult news you ever hear. Immediately you think of the worst case scenario: that this child you love with all your heart, yet haven’t met, may not survive to fulfill all the hopes and dreams you already have for them.

This was our case in December, 2013. Our son was coming at 28 weeks and we knew nothing of the journey ahead of us. I can only imagine what his grandparents, aunts, uncles and friends thought when they heard the news. I left somber and vague voicemails for family and friends to “call me back”, and when they did, they knew something was wrong. My delivery was the same to everyone: “everybody is fine, but the baby came early”. After a few minutes of silence, their responses were the same: “Thank God. What can we do to help”?

In the beginning, friends and family supported us like they would after any other accident or unexpected, life changing situation. People brought food, came to the hospital, took the dog for a walk, helped clean the house etc. The “normal” support was incredibly helpful and got us through those first few weeks while we forgot Christmas and New Year’s festivities to tend to our child fighting for his life.  Once the initial shock was over, we learned our new routine of calling for his weight and reports from rounds the moment we woke up. Confirming his nurse for the day and coordinating schedules. Planning around work, Mom’s doctor appointments, and what milestone we were fighting towards that day.

At this point, friends and family may not be sure how to continue being supportive, especially if it’s a long stay in the NICU. The best form of support is to listen, and know that your response doesn’t really matter, just that you’re there to listen. We now vent and cry about tests, statistics, signs and medical terms we didn’t know existed a few weeks ago. We don’t expect you to have educated answers or feedback to our rants, unless you’ve been there before. So we’re not looking for wisdom, just your attention.

It’s also great when friends and family come to visit the NICU. Introducing your new, punctual, child might be hard, but do it. Let your friends and family see your baby because it will help build your confidence and let your baby know he/she is loved and has lots of support.

We are confident that all of the support we had helped make our son the happy, thriving boy he is today. It doesn’t take much to support parents of a premature baby. You just need to be there, listen and let your early friend know there are people who care, and that you all believe in them.

Post-NICU 101: Common Challenges and Practical Tips for Parents of Premature and/or Sick Babies after the NICU

By Gigi Khonyongwa-Fernandez

It is no secret to parents of babies born early and/or sick that the NICU is abnormal – not matter how much the doctors and nurses try to make it feel as normal as possible for its distraught parents. It is a surreal environment with different, almost otherworldly, rules of its own. Parents adhere to these rules which can include such things as:

• Only being able to touch their child through little portals in the incubator
• Watching their baby hooked up to every sort of apparatus imaginable
• Being constantly surrounded by lights, monitors and alarms
• Seeing their baby cry a sound-less cry because he/she is ventilated
• Mothers pumping their milk and feeding this milk to their baby via a syringe
• Watching their baby being rolled away for yet another potentially life-saving surgery all the while knowing that it may very well take his life

These rules are an incredible shock to the system – and yet somehow, someway parents tend to find a way to adapt and survive the many days, weeks and sometimes months in this strange world. When they finally go home, many parents find that the very thing they envisioned as being the end of a long journey (i.e. leaving the NICU) is in many ways only the beginning.

In this article, I would like to share with you a few of the common challenges parents of premature and/or sick babies tend to face after they have left the NICU as well as some tips on how they can begin to effectively cope with each one. Bear in mind that not every single issue will be addressed because just like every baby born prematurely and/or sick is different (how many times have you heard that?), every parent and the manner in which they cope is just as different.

NICU Separation Anxiety: After spending several weeks/months in the NICU, “D-Day” (Discharge Day) is finally here and parents can hardly contain their excitement. Sitting alongside their feelings of euphoria though are also very real feelings of fear. Parents ask themselves questions like, ‘Can I really take care of this baby?’ Do I know what I am doing?’ ‘What if something bad happens?’ After being surrounded by the safety and expert knowledge/skills of the NICU doctors and nurses in hospital, parents feel utterly lost and afraid now that they have their child on your own.

Tip: The key thing for parents to remember is to trust themselves. During their time in the NICU, parents had an in-depth crash course in how to take care of their child and from the moment they stepped into the NICU, they were learning, albeit unconsciously at times. Eventually parents learned when to be concerned and when not to be and most importantly, they learned to look at their baby, as this often told them more than any monitor could. Their intuition proved to be very valuable and parents frequently provided that link of continuity between all of the NICU nurses, doctors and specialists involved in their child’s care.  At home, parents need to continue to couple the real knowledge they acquired in the NICU with their own parental intuitiveness and innate understanding of their baby. Parents already know the what, when and how of caring for their little one.

Medical Avalanche: Even though they are at home, many parents continue to be intimately connected with the medical profession and feel like they and their babies are still in the hospital. This is because many babies continue to have ongoing medical issues that require constant monitoring and/or treatment intervention. These can range from apnea and feeding and/or digestive issues to breathing and cognitive issues. Many babies go home with oxygen, apnea monitors, NG and/or peg tubes, etc. and almost all come home on some type of medication. A lot of babies require frequent, often weekly, hospital/clinic visits and follow-ups, especially during the initial days/months after the NICU. For babies with more complex needs, home nurses can become the family’s live-in guests. Yet despite having the support of these home nurses, many parents can continue to feel completely overwhelmed and snowed under by the medical assistance their child still requires.

Tip: To steal the concept from the famous Serenity Prayer – Manage the things you can, let go of the things you can’t – and know the difference. Parents: let the health professionals do their job with your little one (s) and you do your job as mummy/daddy. I am not implying that parents don’t remain vigilant regarding their baby’s care – to the contrary – but I’m just saying do not lose sight of your primary and most important role – that of loving parents. I cannot stress this enough. Too many parents continue to ‘look at the monitors’ even when they come home, rather than looking at and playing with their babies. It is when we can stop this very understandable practice, that we begin to truly start seeing and really parenting our little ones.

Developmental Concerns: Some parents will know prior to leaving the NICU that their child has some developmental issue and/or special need, i.e. cerebral palsy, Down syndrome, cystic fibrosis, etc. For many others, it maybe unknown diagnostically, but even in this case, parents usually have a strong and innate ability to know when something may not be quite right. They notice such things like their child not looking at them directly, not holding up his head or sitting up, not appearing to notice if a pot crashes suddenly to the floor, or just that their child acts a bit funny/differently to his peers. In both instances, the shock, weight and anxiety of this reality and/or potential reality can be crushing for parents. Concern for how they as parents can/will cope as well as how their children will cope is a constant worry.

Tip: Know that it is ok to feel crushed because your hopes and dreams for your child are not panning out to be like you had imagined. In some ways it is similar to the grieving process – and parents grieve the thought of what could have been.  This acknowledgment of these feelings is vital.  It is also important for parents to remember that although their child’s life may be different to what they had envisioned, it is still a pretty special life. Parents should seek out help and support at the first sign of a problem so that intervention can begin promptly. Services such as Early Invention can help your child in his overall development.  Trust your intuition and get help, when needed.

Relationship Disconnect: This is a sensitive but key area to discuss. Having a child born early or sick is physically, emotionally, spiritually and financially exhausting from day one and it often continues once you are home. The time in the NICU required such a strong focus on their baby, that many parents forgot their own personal and couple needs. The sheer exhaustion and trauma of the NICU– if not discussed and dealt with in a timely manner – can lead to separation and divorce for many couples or at the very least, create a major point of contention in the relationship. “Recent research has shown that anxiety levels in mothers of premature babies are higher than mothers of term babies, at both 14 days and 14 months after delivery. [This leads] many parents, especially mothers [at a higher risk of experiencing] depression, anxiety and post-natal stress disorder (PTSD). Parents of preemies [also] have….feelings of fear, helplessness, grief and loss of the ‘perfect pregnancy’, even after their baby is out of danger and [is] thriving.”(Bliss, Counseling Service, UK).

Tip: This time in the parent’s lives can either be a stepping stone or a stumbling block in their relationship. It will very much depend on how they approach the situation. If appropriate, seek professional marital help. In addition and/or in lieu of this, it is crucial for both parents to remember that they have lived and are living this experience together and that they are both on the same team. Nobody else, not their parents, siblings, friends, etc. – can truly know or understand the minute-by-minute life in the NICU or the persistent concerns and tasks parents have once coming home. Parents have lived it, felt it, wept, laughed, worried, etc. together and are continuing to do so. There is no need to explain the NICU experience or its after-effects, to one another. Parents should capitalize on this wealth of ‘togetherness’ that only the two of them share. It can often be one of their greatest strengths as they go through the daily routines and challenges of their after-NICU life.

Gigi is the mother of an ex-24 week preemie and Founder of Families Blossoming LLC

Professional Coaching for Preemie and Special Needs Parents and Organizations

Email: gigi@familiesblossoming.com                                              

Website: www.familiesblossoming.com

Ways to Stay Connected to the NICU After Discharge

Did You Know Mom’s Voice Helps Preemies Develop Their Brains?

By Sajib Mannan

Ricky Jane, a 30 year old stay-at-home mom, recently gave birth to her second child. Her first child was born prematurely at 28 weeks gestation.  Doctors took the baby to the NICU right away, where the baby stayed for 4 weeks. Later on, her child faced difficulties with hearing and she consulted a doctor. The doctor informed her that her child’s auditory cortex wasn’t developed well. She asked the doctor what could have caused the problem, and the doctor told her that it develops during childhood, in the early days of life and even starting during pregnancy.

The different sounds a baby hears early on has a large impact on the development of the auditory cortex. Hearing normal sounds like the mother’s voice, helps babies develop their auditory system. This is particularly important for premature babies who are already underdeveloped at birth and who may live for weeks or months in the NICU outside of a natural environment for babies.  Learning of Jane’s baby’s long stay in NICU, the doctor stated that this could be the reason behind his inability to hear effectively. Because the baby frequently heard hospital noises rather than more natural sounds, his auditory power was less developed.

After giving birth, moms often chat and coo with their babies. But when babies arrive prematurely, they’re taken to the NICU, where they largely hear hospital sounds. New research has shown that listening frequently to a mother’s voice enhances preemies’ brain development.

Amir Lahav, an assistant professor of Pediatrics at Harvard Medical School, conducted the research along with his colleagues. The study followed two groups of newborns who were born between 25 and 32 weeks of gestation. One group of 19 babies heard only hospital noises. The other group of babies spent their time in normal surrounding where they heard their mothers’ heartbeats, voices singing ‘’Twinkle Twinkle Little Star’’ and reading ‘’Good Night Moon,’’ and their mother speaking to them in “motherese” for three hours a day. Then they measured the size of the auditory cortex and corpus callosums in their brains.

The babies who heard “motherese” had more developed auditory cortexes than the babies who heard only hospital noises. The auditory cortex transports and processes auditory information in human brain. This research confirmed that proper development of the auditory cortex is highly dependent upon the sounds heard in early life.

What this means is that parents with babies in the NICU should be encouraged to spend more time talking to their babies, perhaps even being coached on the best tone and pace for speaking to their baby.   It’s not always easy to know what to say to a baby, so parents can be told to bring books or sing songs to make it easier.  Some NICUs also have strict visiting hours that limit when or how frequently parents can visit their babies.  While structure is important for NICUs to run effectively and efficiently, it is critical that parents have as much opportunity as possible to spend time with their babies and provide comfort, healing and stimulation with their voices.  Many NICUs are beginning to adopt family-centered care programs to address this need, and hopefully, it’s just a matter of time before many other NICUs follow suit.  Getting parents involved in their babies’ care and development early on can go a long way towards ensuring these babies not only eventually come home, but that they thrive throughout childhood and beyond.

Media Has the Power to Improve Babies’ Health

For decades, mass media has enabled behavior change campaigns for everything from smoking cessation to increased cancer screening to adopting healthier diets.  In the realm of infant health, a number of campaigns have successfully encouraged parents to place babies to sleep on their backs, thereby reducing the risk of Sudden Infant Death Syndrome (SIDS) and resulting in sharply declining death rates.  While not all health-related mass media campaigns are effective, when properly supported, they have the potential to produce powerful changes in a community that can dramatically improve health outcomes.

Here are three innovative, global campaigns that have influenced the lives of babies and young children, and also improved outcomes for premature infants.

“Be A Star” Campaign  Encourages Breastfeeding

This campaign, launched in the UK in 2007, turned that concept on its head by promoting young mothers from local communities as breastfeeding “celebrities”.  Through posters and radio ads, breastfeeding mothers were portrayed as glamorous and beautiful and encouraged other mothers throughout the community to rise to the celebrity status of their peers through breastfeeding.  The campaign was impactful and resulted in a 12% increase in breastfeeding initiation rates among moms under the age of 25 in Central Landshire, UK, where the campaign was first launched. Discover more here.

Hand Hygiene Improves with SuperAmma Campaign

Developed by the Hygiene Centre to promote hand hygiene across 14 rural villages in India, the Super Amma campaign was built around the idea of an ordinary mother portrayed as an aspirational “super-mom” teaching her son to adopt good manners to become successful in life.  Through a collection of billboards, videos, posters and music, this fictional character was brought to life, and was effective at improving hand washing rates in the villages from 2% to 30%. .  Hand washing with soap is such a critical practice for reducing the spread of disease among children that since then a global coalition has been formed to establish October 15 as Global Handwashing Day.

Pequeños y Valiosos (Young and Valuable) Campaign Closes the Word Gap

Research has shown that greater levels of early language exposure can help young children foster language and healthy brain development.  In partnership with Too Small to Fail, Latino media company Univision Communications launched a multi-media campaign last year to encourage US Hispanic parents to use everyday moments to engage in language-rich activities – like talking, reading and singing – with their young children.  Through news programming, online resources, digital content and mobile apps, the campaign aims to inform the US Hispanic community about the importance of language for early learning and provide the audience with simple tools to help them incorporate more speaking with their kids into their daily lives.  Although this campaign was just recently launched, the initiative has already reached millions of Hispanic families.

While these campaigns have produced wonderful results, few campaigns have specifically addressed the needs of premature babies, which number 15 million each year around the world.  In time, Pebbles of Hope plans to launch such campaigns to educate parents and the public at large about ways to protect and improve the health outcomes of the tiniest babies.  Stay tuned for more information on upcoming Pebbles of Hope campaigns and activities.

Simple ways to promote your baby’s healthy development

Even as soon as a baby is born — or in the case of premature infants, when they are stable – parents play an important role in stimulating their child’s development.  It is now widely known that the first few years of life are a critical period of rapid growth and development that set the stage for the child’s progress later in life.  Developmental activities not only help children gain new skills, but studies show that they also help the brain to develop properly.

When my son, Nathan, born 16 weeks premature, came home after 140 days in the NICU, I was determined to do everything I could to help him “catch up” to his full-term peers as quickly as possible.  He came home on oxygen and an apnea monitor, so dealing with his equipment while at the same time pumping around the clock to provide him with breast milk and caring for a newborn quickly became overwhelming.  After doing a bit of research and speaking with his team of doctors and therapists, I was comforted to learn that a few basic modifications to our routine was all he really needed to get a boost on his development.  Simple, every-day activities can go a long way towards building a healthy foundation, and I learned that parents do not need to spend a lot of money on expensive toys or enrichment programs to help their children get the stimulation they need.

Here are a few simple ways in which parents can help get their kids off to a healthy start, all of which I believe greatly helped Nathan during his first few months home:

1. Provide infant massage

In addition to the bonding benefits, regularly massaging your baby can also help reduce muscle stiffness, improve circulation and normalize muscle tone.  It also helps your baby become more aware of his or her body and provides sensory stimulation which increases their awareness of the world around them. For premature babies, one study found that massaging preemies regularly may boost their immune system and help them gain weight more quickly.  With all of these benefits, massage can help every baby.  It’s also great to combine massage with a few simple stretches of your baby’s arms and legs to loosen the muscles.  You can easily work infant massage and stretching into your routine during diaper changes or at bath time.  Just remember to be gentle when stroking your baby to make sure you don’t over-stimulate or hurt the baby.

2. Turn off the TV

The American Academy of Pediatrics released a statement a few years ago recommending that children under the age of 2 not be exposed to television or interactive screens.  This statement was supported by research that found television to be distracting, over stimulating and linked to attention problems later in life for young viewers, even when it is on only in the background.  While many parents may think that baby videos and other media marketed for infants is educational, the reality is children at that age don’t understand what’s happening on screen, and unlike face-to-face interaction, it doesn’t provide them with the immediate feedback they need to learn.  For preemies, this is particularly important because they are already at increased risk of development delays and attention deficit disorder.  Simply turning off the TV and engaging in play activities with your baby can help accelerate development.

3. Read books to your baby regularly

Research has found that early exposure to language has a profound impact on a child’s learning throughout life.  In addition to helping with speech and language development, reading helps build logical thinking skills, increases concentration and discipline, and establishes a stronger bond between parent and child.  For preemies, the benefits of reading to them can begin even while they are still in the NICU.  A recent study shows that premature babies exposed to higher word counts while in the hospital have higher cognitive and language abilities later in life.  Making reading part of a daily bedtime ritual might also help your baby sleep easier at night.  Your baby will begin to associate reading with bedtime and will learn that after a nighttime story, sleep follows.

4. Just spend time with your baby

The most important thing babies need during the early months and years is quality time with their parents.  The simple acts of cuddling your baby, singing to her, or playing baby games like “Peekaboo” all help stimulate the growth and development of your baby’s brain.  Of all the things you can do to help your baby build a healthy foundation, the most crucial is providing your time, attention and love.