I just had a preemie—I’m afraid to have another baby!

By Camille D. Walker, MD, FACOG

This is something that goes through every woman’s mind when she has had a premature baby. You wonder why did this happen to me, will this happen again, and what can I do to prevent this from recurring.

Unfortunately, the majority of cases of preterm delivery occur in women with no risk factors and/or risk factors that cannot be changed. In addition, science has shown there are biochemical, hormonal, anatomical and other causes for preterm delivery but there is continuing debate as to the final pathway(s) for preterm delivery.  Approximately 80% of deliveries are spontaneous (unexpected) but the other 20% are due to medical or pregnancy situations that require a preterm delivery. Some risk factors for spontaneous preterm deliveries include previous preterm delivery, twins and greater, problems with the uterus (holds the baby) and/or cervix (mouth of uterus that opens for baby to come out) and African-American heritage.

In the United States, 1 in 9 babies are born premature. About 1 preterm baby is born every minute! The subsequent risk for another preterm delivery is two fold (15 – 30%) but most women deliver at term. Some factors that increase risk for another preterm delivery include African-American heritage, short interval between pregnancies (6 – 18 months) and gestational age of preterm delivery (the earlier the delivery, the higher the risk for another preterm delivery).

What can you do prior to another pregnancy to the decrease the risk of another preemie?

  • WAIT an appropriate time interval to get pregnant again (  > 12 – 18 months)
  • STOP smoking or using illicit drugs such as cocaine, and decrease drinking
  • Extremes of weight have been associated with preterm delivery. Weight loss or weight gain maybe recommended prior to pregnancy.
  • EAT healthily—start prenatal vitamins before next pregnancy. Some studies suggest that folic acid and omega – 3 fatty acids may improve outcome (controversial).
  • SPEAK with high risk pregnancy specialist (maternal fetal medicine specialist or perinatologist) prior to next pregnancy
    • To review if other risks factors, such as history of surgery on the cervix—cone biopsy or multiple abortions ( > 2)
    • To perhaps have special testing of the uterus to determine if there is a defect that increases risk for preterm delivery
    • If it was an indicated preterm delivery, the doctor may order blood work or other testing to see if there are risk factors for another preterm delivery.
    • To discuss potential management with the next pregnancy
  • If your next pregnancy is going to be the result of in-vitro fertilization, ask for the transfer of one embryo to decrease risk of twins and higher.

What can be done during pregnancy to decrease risk the risk of another preemie?

  • Start prenatal care very early to initiate preventative therapy
  • Request to be seen by a high risk pregnancy specialist, if not seen prior to pregnancy
  • If in your previous pregnancy you delivered spontaneously between 20 0/7 – 36 6/7 weeks, you are a candidate for 17- hydroxyprogesterone (17-OHP) injection (hormone injected on a weekly basis between 16 – 20 weeks until 37 weeks). Please note that some doctors may start therapy if your prior pregnancy outcome occurred between 16 – 19 6/7 weeks. Even if you have a spontaneous delivery at 36 weeks, it is still a preterm delivery and you are a candidate for the 17-OHP injections.
  • Ask the doctor to start monitoring your cervix every 1 – 2 weeks between 14 – 16 weeks. If the doctor sees that the cervix is shortening and/or opening up from the inside, he/she may recommend a cerclage (stitch around the cervix to hold the baby) and/or vaginal progesterone (hormone placed in the vagina to decrease preterm delivery).  Vaginal progesterone is more likely to be used if the cervix is short and there is NO history of preterm delivery.
  • Some doctors may also perform fetal fibronectin testing (swab of the vagina which can predict risk for preterm delivery) between 22- 34 weeks.
  • Screening for certain infections has not been shown to decrease risk of preterm delivery. However, some studies suggest that treatment of urinary tract infections (bladder infections) can decrease risk of preterm delivery.
  • Be aware of signs and symptoms associated with preterm labor/delivery such as menstrual cramps with or without diarrhea, contractions, pelvic pressure, vaginal bleeding or leakage of fluid, change or increase in vaginal discharge, or lower backache or pain. If present, contact your doctor for further instructions.
  •  Reduce  moderate/severe stress level

What happens if you go into preterm labor again?

  • The doctors will use tocolytic drugs (special medications stop labor) long enough for your baby to receive steroid shots (drugs to help strengthen the baby’s lungs).
  • The doctor may use fetal fibronectin testing (see above) to predict risk of early delivery
  • You may be transferred to a regionalized perinatal center—centers that have high risk pregnancy specialists and neonatal intensive care units ( units that take care of premature and high risk babies).
  • Antibiotics may be used for a short period of time to decrease risk of infection in the baby or prolong pregnancy, if your water bag broke.
  • One of the tocolytic drugs is called magnesium sulfate and has been shown in some studies to protect the baby’s brain. Some of the studies suggest that this drug be used if preterm delivery is likely. Please note there is no consensus on timing and dosing.
  • If you are at high risk for delivery, speak with neonatologist (high risk baby doctor) to review issues and management after the baby is born.
  • If your labor is stopped, please note that long term tocolytic drugs (usually taken by mouth) have not been shown to prolong pregnancy and are usually not used after the acute treatment of preterm delivery.
  • Please note that bed rest, limited work and reduced sexual activity has not been shown to reduce preterm delivery in women at risk. However, we as healthcare providers, including myself sometimes, continue to recommend this. Some studies have shown bed rest to increase risk of gestational diabetes, excessive weight gain and thrombosis (blood clots). In addition, this can cause social and psychological disruption such as income loss.

So if you question if you should have another baby, in most cases, the answer is YES. The majority of times the next pregnancy will be a full-term delivery. Don’t wait until the next pregnancy to start evaluation. Be PROACTIVE and start before your next pregnancy. There are now certain precautions and treatments that can be used to decrease the risk of preterm delivery. As with all medical information seen on any website, please discuss and review with your healthcare provider.

Good luck with next pregnancy!

Education and Support for New Parents: Why It’s Important

By Zoe Quint

It’s expected that a general surgeon will spend years studying and training before he or she is able to operate on a patient. Similarly, a helicopter pilot must go through rigorous written exams and flight simulations before they are considered capable of maneuvering an expensive aircraft. However, when it comes to being a new mom, there’s a common belief that most women will just “know what to do.” The truth is, parenting is a skill that must be acquired. The good news is, it is a skill that nearly everyone can learn easily, particularly if you enlist the help of social networks and parent education resources.

As a new parent, your social support system and access to parenting knowledge is especially valuable when complications arise during or after pregnancy. If your baby is in the NICU, you might feel helpless and unable to provide for your newborn as you originally intended. But more than ever, you can turn to parent education as a way to empower yourself and also help you (and if applicable, your partner) to be the best parent you can be.

New parent education can be acquired through a number of ways:

1. Join a new parent support group. Pace Moms is an organization that has groups for first and second time mothers. Preemies Today (DC Metro Area) is a PreemieCare Spotlight Community Support Group, a preemie parent support group serving Northern Virginia, Maryland, and Washington DC. It is their mission to reach out and provide support to families of infants born prematurely beginning at birth and throughout childhood. Services they provide include parent support, online support, family gatherings, educational seminars, a monthly newsletter, and the sharing of ideas and experience. Similar organizations supporting parents of preemies exist in other areas of the US as well.

2. Read a book. “Mothering the New Mother: Women’s Feelings and Needs After Childbirth (A Support and Resource Guide)” by Sally Placksin is a wonderful resource. Also, “The Birth Partner: Everything You Need to Know to Help a Woman Through Childbirth” by Penny Simkin, P.T. is a book that describes the birth process, with special emphasis on the emotional needs of the laboring woman and how to meet those needs. For parents of premature babies, “The Preemie Primer” by Jennifer Gunter is a great resource for helping parents navigate the challenges that come along with prematurity.

3. Look online. There are a number of online resources, including what is provided by Pebbles of Hope, which can educate you and your family on what it’s like to be the parent of a premature baby and various webinars on learning more about what you can do to support your baby throughout this process.

4. Reach out to family and friends. Remember that they are a wonderful source of support and can offer advice and help during difficult times.

5. Continue to maintain your relationship with your partner. With the introduction of a new baby into your family, and particularly if that baby was born prematurely, it is important that your relationship with one another remains a source of strength and comfort for you both.

6. Take care of yourself. Take a long walk or a nap if you need it. Drink a comforting cup of tea and watch your favorite movie. It’s important to give yourself the support and down time that you require to be the best version of yourself.

As a new parent, it’s common to feel anxious over the well-being of your baby and to doubt your capability to manage your new role. But just remind yourself that these fears are coming from a good place: you want to do what’s best for your child. In fact, you might find through your research and collaboration with family, friends and even support groups, that many other parents share similar concerns. However, the more you seek out education and social resources and continue to educate yourself, you will be well equipped to determine what parenting style is best for you and your family. Remember that there is not one “right way” to be a parent, but rather, parenthood itself is a process in which you can determine what beliefs and practices complement your family’s lifestyle.

The Importance of Clean Birthing Practices Worldwide

By Zoe Quint

While disparities in the quality of healthcare facilities are undoubtedly present in America, we take many standard practices, including clean birthing procedures, for granted. These practices include, but are not limited to, proper hand washing and hygiene and maintaining clean birthing rooms, tables and instruments. In the United States, we expect clean running water and electricity at all of our hospitals and healthcare facilities. In fact, it is hard to imagine a hospital that lacks access to running water, or that doesn’t have electricity 24 hours a day. Unfortunately, a basic lack of fundamental resources is a reality for many hospitals in developing countries around the world, particularly in many countries in Africa and South Asia.

Resource scarcity during labor and delivery prove to be especially difficult for preterm or low birthweight (LBW) babies. According to the World Health Organization (WHO), over 9 million LBW babies will be born in South Asia and another 3 million in sub-Saharan Africa this year. These babies are particularly vulnerable and usually need extra care to prevent their death from avoidable causes, such as hypothermia (cold), hypoglycemia (low blood sugar), or infections. Tragically, not all get the care they need and do not survive.

Expecting mothers in the U.S. might be deciding whether they want their birth to happen at home, in the hospital or in a birthing center. However in many developing countries, it is not uncommon for women, especially those in rural settings, to give birth on rags, or directly on a dirt floor. Many of these women develop sepsis (infection after prolonged vaginal delivery), which can be fatal. Sometimes, the infant can also contract sepsis as well. The biggest form of assistance that has shown a marked improvement in reducing the number of infant and maternal mortality is the introduction of clean birthing kits (CBK). A basic birthing kit aims to promote the WHO’s “6 Cleans”:

 

      1. Clean hands
      2. Clean perineum
      3. Clean delivery surface
      4. Clean cord cutting implement
      5. Clean cord tying
      6. Clean cord care

 

A kit will typically include a plastic sheet, plastic gloves, a clean razor and cloths. A clean razor is especially important so that umbilical cord infections can be prevented. Kits are usually provided by nonprofit aid organizations, such as Cleanbirth.org.

It is important for caregivers to be aware if the laboring mother begins to have obstetric complications. This often proves difficult, as many women in developing countries give birth without a skilled provider by their side. This can prove fatal if emergency resuscitation or another intervention is needed for the infant. While most babies are able to begin breathing independently at birth, up to 10 percent of newborns require some form of assistance to initiate breathing. Failure to breathe at birth most often occurs with preterm babies.

Helping Babies Breathe is an educational initiative that is overseen by the American Academy of Pediatrics, WHO, USAID and a number of other global health organizations. It is geared towards helping teach neonatal resuscitation to skilled birth attendants in resource-limited areas.

Overall, regardless of where you are in the world, clean birth practices are integral to ensuring a safe birth for both mother and infant. Clean birthing kits are helpful, but there must also be educational intervention at the individual, community and healthcare facility levels. A successful birth, natural, preterm or otherwise, is nearly always a communal and supportive effort.

Tips for Stress Management during Pregnancy

By Zoe Quint

While stress is a part of life, it is also believed to be one of the leading causes of premature labor during pregnancy. Long-term stress can have detrimental effects on your immune system and your overall health. While stress can come from a soon-to-be mother’s own personal anxieties and worries, stress can also be due to a number of reasons, such as work and home environment, personal relationships and even societal issues, such as an ongoing war or an economic recession.

The good news is that there are a number of effective ways to lower one’s physiological and emotional response to stressful situations. As a birth doula, it is my role to work with pregnant women, advocate for them and find ways to alleviate their stress during pregnancy and the birthing process. Read on to find a list of the top hints that I find most helpful during pregnancy and to help promote a healthy and happy mother and baby!

  1. It is very important to seek out a strong support network during your pregnancy and after birth. This includes, but is not limited to, spouses, partners, family members and friends. While mothers and women in general are amazing, it is always nice to have a helping hand (or three!) It’s important to also use resources such as doulas, caretakers and other pre- and post-birth education resources (such as Pebbles of Hope) to have as references.

 

  1. Regular exercise is also very integral to reducing stress. Popular forms of exercise during pregnancy are walking, calisthenics, and prenatal yoga. I like to encourage building strength in your legs and hips through squats and lunges. Prenatal massage is also encouraged for women experiencing back and hip pain. It is always important to consult your healthcare provider before starting massage sessions or an exercise regimen.

 

  1. Deep breathing is a good stress reliever whether or not you are pregnant! It is good to do alone, or with your partner or friend. Focus on breathing in slowing and deeply through your nose, feeling your lungs fill with air. Slowly release your breath and exhale completely through your mouth, pushing out as much of the air as you can. Deep breathing helps calm your immune system and quiets your mind.

 

  1. A healthy and nutritious diet is key during pregnancy—remember, you are eating for two! Also remember to avoid alcohol and caffeine. A well-balanced diet will be beneficial not only for your baby, but will also help you feel your best.

 

  1. Educating yourself about pregnancy and the process can be both calming and empowering for soon-to-be parents. Knowing about what you can expect and all of your options is definitely advisable. It is also recommended to educate yourself about possible complications, such as premature birth. While you shouldn’t necessarily plan for complications, you will thank yourself for doing your “homework.”

 

  1. For expectant moms (and dads), loving yourself and self-care, which means cultivating a good relationship with yourself both physically and mentally, is vital. While exercise during pregnancy is certainly encouraged, it is important to remember that your body is going through many changes; it is important to listen to your body and make sure you are also getting the appropriate rest that you need, sans guilt!

I want to reiterate that: It’s not about getting every little thing done perfectly, but doing the best that you can. Whether it’s something as simple as encountering bad traffic on the way to the hospital, or even when faced with emergency birth complications, such as preterm labor, remember that even though we cannot control every single event, we can do our best by educating and empowering ourselves. For our partners, family and friends, I encourage them to learn about how to be supportive in times of need. Setting intentions can serve as a means of both comfort and assurance when the future is sometimes unknown.  In fact, stressful situations may even help you to challenge yourself and grow in ways you never thought possible. While the stresses of life are not going to go away anytime soon, what’s most important is how we handle all the events that life presents to us.

 

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

By Mark Axmacher

 

The only way to survive a stay in the NICU is to lean on those who arrived before you. In the NICU, the nurses and doctors refer to a group of babies born around the same time as a class. Much like high school or college. And much like high school or college, the bonds you form with your classmates will last the rest of your life. The support you receive from your friends and family is tremendous, but it will never replace the support, in the NICU and after, of the other new parents facing the same terrifying and life changing situation of a premature birth.

My wife and I arrived at the hospital, three months before we were due, and ninety minutes later our son was born. At two pounds, five ounces, we didn’t even know it was possible. But from an empty hospital room, there we were. I was a new father, dressed in full scrubs and alone. I was asked to leave the delivery room because my wife was having a C-section and they needed to sterilize the room. I expected to be back in less than five minutes to hold my wife’s hand and support her as we entered the most traumatic experience of our lives. I had time to call four people and leave desperate voicemails that I only imagine were indecipherable.

Then a nurse came in with a cup of orange juice. My only thought: Why? Then I learned my son was born without me, because the doctors didn’t have time to get me from the next room and save both of them. The nurse told me to drink the orange juice because it would calm my nerves. It didn’t. I was able to see my son for about thirty seconds before I was escorted back to the hospital room. My wife was in major surgery, my son was fighting for his young life, and I was alone. I had to keep it together.

The only way I could was to accept the immediate bond created with the other new parents, and fathers especially, that we met in the NICU. I remember feeling betrayed, confused, angry and hurt. And I remember a new friend reaching across the waiting room to shake my hand. “I’m Bryan, everything will be fine”, he said. I stared in disbelief, but shook his hand, and felt a little better.

From there, we formed an incredible bond with the other families in our class. We faced similar challenges, fought the insurance companies together, and encouraged each other to enjoy the journey. We realized together that if we looked at our situations as dire, then they would be. So we decided, as a group, to look at this as extra time with our babies.  Fathers learned together how to be supportive and how to provide for a new family with extreme challenges. We learned together how to keep the home running and to keep each other calm when doctors gave us worst case scenarios. We learned together that we were our best support, and I’ve been lucky to call these other fathers friends, even after we all left the NICU.

No matter where our lives, and our thriving babies, take us, we know we wouldn’t have made it out of the NICU as positively as we did without each other. We were able to enjoy each other’s victories and encourage and support our babies as a class. I encourage anyone thrown into this situation to reach out, shake someone’s hand, and tell them it will be fine. Because, most likely, it will.

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.