How does Discrimination affect Birth Outcomes?

Pebbles of Hope speaks with Miriam Zoila Pérez, a doula, writer, social activist and TED speaker, in the latest episode of the Bridging the Gap podcast

Pebbles of Hope releases today the fourth episode of its podcast series, Bridging the Gap, in which we explore the health disparities that affect NICU families.  This latest episode features Miriam Zoila Pérez, a gender columnist for Colorlines and the founder of Radical Doula, a blog that covers the intersections of birth activism and social justice.  In this episode, Cheryl Chotrani, Executive Director of Pebbles of Hope, speaks with Miriam to discuss the social factors that impact women’s health during pregnancy and during the newborn period.  A condensed version of our conversation is below.

Please share with us your path as a doula, now activist and how you found yourself focusing your life’s work on maternal health issues.

Miriam: I was inspired to start on this path through a course I took in college called The Anthropology of Reproduction.  I had always been interested in medicine and initially planned to go on to medical school, but that course exposed me to the different types of birthing environments in the US and the issues that affect pregnant women.  I began researching the US medical system, particularly as it affects maternal health.  I completed a doula training program while I was in college and that is what launched me in this direction.

From your experience as a doula, how do you think coming from a disadvantaged background affects a woman’s experience during pregnancy?

Miriam: In the United States today, I believe the biggest factor affecting women’s health during pregnancy is race.  If you look at the research about health disparities, the women who suffer the most and have the worst outcomes during and after pregnancy are women of color, particularly African-American women.  Beyond that, indigenous women as well as some groups of Latina and Asian-American women also have poorer outcomes than White women.  So, while class is an element, there is research that shows that even middle-class Black women still have worse pregnancy and birth outcomes than their middle-class White counterparts.  The primary factor, then, is not about class, it’s about race.  I saw that as a doula volunteering at a public hospital in North Carolina.  As a Spanish-speaker, I worked with some Latina women there and I saw firsthand how they were treated differently than their White, English-speaking peers who had private insurance.  I don’t think it comes as a surprise that racism affects the way people receive medical care.  But, even racism outside of the medical system has a really significant impact on pregnant women’s health.  So, when we see that Black women are four times more likely to die due to pregnancy and birth-related causes than White women, the reason for that is racism.

Are women who are native-born to the US affected differently than women who immigrate here? Are these issues endemic to the US or do these racial/ethnic disparities transcend country borders?

Miriam: It would be interesting to look at a similarly developed country to the US and investigate what the race-based maternal health disparities are like, perhaps somewhere like the UK.  I am not familiar with the statistics internationally, but what I do know is that there is something called the immigrant health paradox, a phenomenon in which health outcomes for immigrants worsen the longer they stay in the US.  Fiirst-generation Latina immigrants, for example, tend to have fairly decent outcomes when it comes to maternal health, but their children and their children’s children have worse outcomes.  That points to something in the US environment that is making people sick, and I would argue that it’s racism.  There are 80+ countries around the world that do better than the US at keeping their pregnant women and new mothers alive and healthy, despite the fact that the US spends more per capita than any other country on maternal health.  So, there really is huge room for improvement.

For Latina women and other non-English speaking women, how much do you think language plays a role in the quality of care they receive?

Miriam: Language is a huge barrier, and I saw that firsthand in my work.  Even in a situation in which the head resident speaks Spanish, there is a lot of power in deciding what information gets translated and what does not.  In North Carolina, where I worked, interpreters were only legally required to be present when paperwork was being signed, but the rest of the time during labor and delivery, an interpreter often was not there.  So, a lot of conversation was happening about the pregnant woman in English that was not translated to the patient, and therefore, she did not have access to that information.  You could imagine what it might feel like to be in labor and to have people around you talking about your situation and your health and you can’t understand anything they’re saying.  So, while the statistics for recent Latina immigrants, who are more likely to be Spanish-speaking, aren’t horrible, that doesn’t mean that their experience during the birth process is positive.

What happens after the baby is born? What role do these factors then play in the health of the baby after birth?

Miriam: My doula work has been focused primarily on labor and delivery, but from a research perspective one of the outcomes we see for women of color, particularly African-American women, is a higher incidence of preterm birth and low birth weight babies.  That is a major factor for developmental issues throughout the baby’s life.  Baby’s born prematurely and/or underweight are much more likely to have a whole host of problems that can affect them over their lifetime.  We also know that preterm birth is itself linked to stress, and racism plays a role in that.

You spoke in your TED talk about a new model for prenatal care called “The JJ Way”.   What does that model entail and why has it had such positive results?

Miriam: The JJ Way is a prenatal care model pioneered by a midwife named Jennie Joseph based near Orlando, FL.  She’s been doing this work for about 12 years and has been able to get almost all of the women that she’s worked with to term with healthy babies.  Her program specifically reaches out to low-income, Black and Latina women and many of them are at high-risk for the problems we’ve been talking about.  

So, what’s the secret of her model?  I think the bottom line is that it offers a buffer to the stress that the women are facing in their daily lives.  No one is turned away due to lack of insurance or ability to pay, so that’s one huge barrier removed that a lot of low-income women face.  Another big part of her model is that she treats everybody with respect and believes that all of her women, regardless of what the statistics say, can get to term with a healthy baby.  She also integrates all of her staff into her model so that the nurses, receptionist and everyone else that works at her clinic is an important part of the care that is provided.  All staff members are empowered and available to answer questions, provide patient education or offer emotional support. Those are just some of the things that make her model unique and have let to some really great outcomes.

How can at-risk women who do not live in close proximity to a JJ clinic access the support and resources they need to improve their odds for a healthy baby?

Miriam: The good news about the research is that it suggests that the approaches providers can take do not require expensive technology or complex interventions. It’s really about creating an environment where all pregnant women feel supported, respected and heard.  For the women herself, she can look for ways to find this type of support, whether it be in her family system, a friend circle or a healthcare provider.  Also, being aware of what’s going on in your body when a stressful event occurs is also important. Things like meditation, therapy, and adopting all sorts of mindful practices can be useful to help women become more attuned to the responses in their body when they face discrimination or other harmful triggers.

How can healthcare providers do a better job of serving all women and helping their patients navigate these issues of race and discrimination?

Miriam: I think our healthcare system is missing respect and integrity.  One thing that Jennie does differently is that she treats the mom as part of the team in her own care.  Many times, providers operate through a top-down approach in which instructions are given and the patient is expected to follow them and then blamed for any negative outcome if they do not follow everything exactly as they were told.  For Jennie and other providers like her, they very much use a team approach instead.  Providers also need to do a better job of working with patients where they are, considering the realities of their lives and the resources they have access to.  Instead of chastising a patient, for example, for not adopting a healthier diet, understand that they may not have access to transportation to get healthier food options.  So, finding ways to tailor recommendations so that they consider these types of barriers is also important.

The full audio copy of this episode as well as all other episodes of the Bridging the Gap podcast is available on iTunes, Google Play or wherever you get your podcasts.  

Why is the Preterm Birth Rate so high in Mississippi?

Pebbles of Hope speaks with Dr. Mobolaji Famuyide, Medical Director of the NICU at the University of Mississippi Medical Center, in today’s episode of the Bridging the Gap podcast

Pebbles of Hope releases today the third episode of its podcast series, Bridging the Gap, in which we explore the health disparities that affect NICU families.  In this episode, Cheryl Chotrani, Executive Director of Pebbles of Hope, speaks with Dr. Mobolaji Famuyide to discuss the unique issues that affect NICU families in Mississippi and why the state has experienced poorer outcomes related to prematurity compared to other parts of the country. A condensed version of our conversation is below.

Please share with us your background, your career as a neonatologist and the path you took to become the Medical Director of the NICU at UMMC.

Dr. Famuyide: I am native to Nigeria in West Africa and come from a family of academics.  Both of my parents are clinical psychologists so it was second nature for me to pursue a career in a field that is so beneficial to humanity.  I went to medical school in Nigeria then moved to the United States for further training after one year of residency in Nigeria.  I trained at the Bronx Lebanon Hospital in New York and at the University of Maryland for my fellowship.  When I completed my training, I then came over to the University of Mississippi to start my academic career.  I’ve been at UMMC now for almost 10 years and I know I made the right choice coming to Mississippi.

Every year, the March of Dimes publishes a report card that assigns a grade to each state based on their preterm birth rate in relation to the national average.  Why does Mississippi consistently rank as the lowest performing state in the country and what are some of the underlying factors?  

Dr. Famuyide: We have a huge burden of premature births and admissions to our NICU.  Being the only level IV NICU in the state, we unfortunately get to see the sickest babies and sickest moms across the state.  As you know, the reasons for prematurity are very multi-factorial.  I like to think if as a combination of genes and environment.  Genes are inherent in us, and that is something we can not change.  In some studies that have been conducted amongst people of color, there seems to be, for some reason, a higher incidence of prematurity in that sub-group.  The environment, however, is something that is modifiable.  When we talk about the environment in relation to the African-American population, we have to talk about the long-term impact of racism and stress on the individual as they navigate their daily lives.  In talking about the environment, we also have to consider modifiable factors such as access to healthcare, which is related to the geographic location in which the individual lives.  Mississippi is a predominantly rural state, so all of these factors are critically important to health outcomes in the state.  For rural populations, many are served by local access hospitals that are not always able to provide the necessary services that a high-risk pregnant woman needs.  

Another thing that also impacts prematurity in general is maternal health.  A mom that is perfectly healthy with a normal reproductive tract is most likely not going to have a premature baby if there is no genetic basis for it and if they are not exposed to added stress factors imposed by the environment.  But a mom with pre-existing illness, such as diabetes or chronic hypertension, would be at a much higher risk of experiencing a negative birth outcome, including preterm birth.  Mississippi has some of the highest rates of diabetes and hypertension and we believe that significantly impacts the rate of prematurity in the state.

Infant mortality is another indicator that Mississippi has challenges with, and the current rate in the state is comparable to some countries in the developing world.  Are infant mortality comparisons between countries and/or states appropriate and how concerning are the current rates in Mississippi?

Dr. Famuyide: When we talk about anything that involves data, it’s always best to compare apples to apples.  When we don’t, it becomes very difficult to interpret or make appropriate decisions based on those numbers.  It is true that the infant mortality rate in the United States is higher than one would expect for a developed country, however, many of the things that we do here and the way we extract data is completely different than what is done in other parts of the world.  I’ll give you an example. When we compare ourselves with our counterparts in Europe, in the US we tend to accept and perform interventions for babies at lower levels of viability.  Therefore, when you compare resuscitation and mortality rates, you have invariably included a large sum of babies that in many European countries would not have been considered viable.  When we calculate infant mortality in the US, we include all of those babies.  I believe that explains in large part why our infant mortality rates appear significantly higher than other comparable countries.  

That being said, there are several factors within the US that will impact infant mortality that other developed countries do not have to contend with.  In Canada and the UK, for example, every legal resident has access to some healthcare.  When that happens, individuals are more likely to seek out care when they need it.  In the US, although a pregnant woman may be covered by Medicaid due to her pregnancy, she will likely not access healthcare if she is unable to afford it.  For conditions such as Diabetes, it is not only what happens during pregnancy that affects the birth outcome, but pre-conception health also plays a major role as well.  I think that is one of the primary reasons why our infant mortality rate is high in Mississippi.

Should we be concerned about the infant mortality rate then, particularly as it seems to be rising in Mississippi?

Dr. Famuyide: Well, I think we should be concerned.  We’ve done a lot of work with regard to birth defects that are preventable.  Folic acid is the classic example.  It’s in many of the foods we eat now.  That’s a good example of something that we have been able to modify to reduce morbidity and, in some cases, mortality as well.  However, for something like Sudden Infant Death Syndrome (SIDS), we have seen many different campaigns to address this issue, but Mississippi still has many problems with this.  Last year, we had a crop of cases across the state that forced us to rethink how we message sleep safety to parents.  Going back to the fact that we live in a rural state with a substantial low-income population, if the message is not getting out to the people who need to hear it, there is no way for these parents to know the right way to practice.   A mother with multiple children living in a single-bedroom house is most likely going to put her baby in the bed with her and the possibility of a roll-over happening is high.  But, if mom is able to understand that it’s ok to put the baby on a simple surface, even if it’s just a small box next to the bed, she gets the message and we prevent that death.  So, there is still more work that we can do to reduce the infant mortality rate.

With UMMC being the only level IV NICU in the state, how does that affect your provide optimal care to all of the babies that you receive?

Dr. Famuyide: There are many types of advanced levels of care that level IV NICUs can provide that lower level NICUs are unable to offer.  When one thinks about the concept of regionalization, it makes sense to have one central regional level IV nursery that is able to provide the highest level of care, but what we currently lack in Mississippi is a good network of feeder level III and level II nurseries that can take care of babies that don’t need the highest level of care, or until they can be transported, if necessary.  That way, more babies can be cared for closer to their parents’ home, which will help with bonding as well as make it easier and more cost effective for parents to visit their babies in the NICU.  I believe that would be the best way to optimize care for these babies.

In an ideal world, what would you like to see change in your hospital or across the state of Mississippi to improve the care and outcomes for babies in your state?

Dr. Famuyide: Single bed, private NICU rooms.  We still have the open bay system in our NICU with little pods containing 4-6 babies each.  All of these babies are fully exposed to the noise and activity going on in the NICU.  In an ideal world, I would like to have a single, private room NICU for several reasons.  Parents are more likely to be able to visit and stay with their baby if they have a separate space.  They will likely spend more time at the hospital, and breastfeeding rates would probably improve if mom has a private space to pump while watching her baby.  

My second wish would be to have expertise across the state with level II and level III NICUs in strategic locations across the state.  If we have more well-equipped lower level NICUs, babies can be cared for closer to the home and closer to the pediatricians that will ultimately be taking care of them after discharge.

The full audio copy of this episode as well as all other episodes of the Bridging the Gap podcast is available on iTunes, Google Play or wherever you get your podcasts.  

 

How do Health Disparities affect NICU Families?

Pebbles of Hope speaks with Jenné Johns, director of health disparities at a national managed care organization, in the newly released episode of the Bridging the Gap podcast

Pebbles of Hope releases today the second episode of its podcast series, Bridging the Gap, in which we explore the health disparities that affect NICU families.  This episode features a conversation between our Executive Director, Cheryl Chotrani, and Jenné Johns, a director of health disparities at a national managed care organization.  Jenné also happens to be the mother of a micropreemie and author of children’s book “Once Upon a Preemie”.  Our conversation explored the causes of health disparities, how they affect NICU families, and some of the solutions that are being evaluated across the country. A condensed version of our conversation is below.

What do health disparities mean and why is this such an important issue?

Jenné: Health disparities can be defined as differences in health status among distinct segments of the population.  These differences may be influenced by factors such as gender, race, ethnicity, education, income, disability or geographic location.  Health equity, on the other hand, is achieving the highest level of health for all people by equalizing the conditions for health across groups, especially those that have historically been disadvantaged.  Addressing health disparities helps reduce and, in some cases, avoid preventable premature deaths.  In addition, health disparities cost the nation human capital and have a tremendous impact on our economy.  A study conducted by the Joint Center for Political and Economic Studies found that the financial cost of health inequities and premature death cost the US nearly $1.24 trillion between 2003 and 2006.  The financial and social impact of health disparities make this a major issue that will require national attention and new policies to address this problem.

What contributes to these disparities and how do they come about?

Jenné: Many of the factors that contribute to disparities in health outcomes are called social determinants of health.  These are social and economic factors that tremendously impact the health outcomes and life trajectories for various social groups.  These factors include things such as education-level, income-level, zip code, access to transportation, among other things, and collectively these factors contribute to over half of a person’s health outcomes.  For example, studies have shown that individuals living in certain zip codes close to inner-city hubs in major metropolitan areas have shorter life spans than those living further away from these locations.  Many of these neighborhoods are plagued with violence, crime, fast-food establishments that don’t promote health and limited safe areas for children to go outside and play.  All of these factors contribute to the persistence of health disparities in this country.

How do health disparities specifically impact NICU families?  What effect do disparities have on the health outcomes of babies and/or their mothers in the NICU?

Jenné: Let’s start with the preterm birth rate disparities.  African-American, Hispanic and American Indian babies have higher rates of prematurity than their counterparts.  Almost 10% of all babies in this country are born prematurely and almost half of those are born to African-American mothers.  The gap in preterm birth rates between African-American women and women of other racial groups has also widened according to the latest March of Dimes Prematurity Report Card.  Something is happening that is landing some babies in the NICU at higher rates than others, and that requires national attention.

Do you have any thoughts on what is causing this gap?  Why has it persisted for so long?

Jenné: Researchers, practitioners, physicians and national thought leaders have postulated that the impact of chronic and toxic stress are impacting and affecting babies in their mother’s wombs.  So when women experience life trauma repeatedly, the impact of that can be felt in the womb and shows up as a higher premature birth rate.  All of the social determinants of health bundled together in addition to chronic stress building up over time contribute to these disparities.  For NICU families, disparities can be felt in two ways.  First, on the side of the parent, it can take the form of a mother having to decide between going to a low-wage job for much-needed income and benefits or staying bedside with their baby.  They may have difficulty finding transportation to the NICU or may face challenges interpreting the medical jargon that will be thrown at them.  For mothers that don’t speak English there may also be language barriers that lead to disparities.  On the side of the provider, hospital staff may not always have the proper training to know how to deal with these issues they may come across with their NICU families.  Cultural competency plays a big role in how medical professionals respond to families from disadvantaged groups.  Communication practices really need to be tailored and targeted to meet the needs of each individual family in order to be effective.  Having parent support and psycho-social support is critical and ideally should be offered to all families as soon as they enter the NICU.

What, if any, gaps in care or support did you experience as a former NICU mom?

Jenné: Though my family would not classify as underserved, the hospital in which my son was born was located in an underserved community.  At that hospital, we did not have the benefit of having a parent-led support group, which I believe would have made a tremendous difference in helping us cope with the trauma of the NICU.  That’s something that I wish would have been made available to me and to all of the families that were in the NICU at that time.

How else might disparities affect the health of a NICU baby?

Jenné: I am fortunate to be a homeowner, so I had a safe, clean environment for my son to come home to when he was discharged from the NICU.  Housing stability, safe housing, clean housing is another really big factor and an issue for some underserved families.  Some members of the Medicaid population are very mobile, frequently moving from home to home.  When you have a fragile baby that you’re bringing home from the NICU, not all of them are going home to a stable, safe and clean environment.  It is very easy for a NICU baby to end up back in the hospital, so a family’s housing situation can be a major factor in that.

What can be done to help reduce disparities and narrow the gap?

Jenné: An organization called the Centering Healthcare Institute is leading a phenomenal model nationally that aims to provide prenatal care in a non-traditional way.  Their approach involves inviting pregnant women who are around the same gestational age to receive group prenatal care in which they participate in a themed educational discussion on various topics relevant to having a healthy pregnancy and baby.  The initial outcomes that have been analyzed for the women that have gone through this model show that these mothers are experiencing lower rates of preterm birth and that the gaps in outcomes between women in different groups can be reduced or eliminated with this approach to care.  There is something very powerful about bringing groups of women together who are around the same gestational age of pregnancy, walking them through a 10-visit journey to get to a healthy birth together and then celebrating having a healthy baby.  

Another initiative that seems to be helping is the adoption of class standards that encompass culturally and linguistically appropriate services that each healthcare environment can take on to ensure proper staff training, availability of language interpretation resources and diversity among the staff providing care.  Hospitals are also now being asked to report outcomes based on race, ethnicity and language, which allows for healthcare providers and insurers to access more data to better understand variations in health between groups so that interventions, programs and services can be targeted to disadvantaged groups more effectively.  All of these things will be helpful to improving disparities in preterm birth rates and outcomes during and after the NICU.

The full audio copy of this episode as well as all other episodes of the Bridging the Gap podcast is available on iTunes, Google Play or wherever you get your podcasts.  

 

Register now for the Pebbles of Hope Virtual Walkathon in November to support prematurity awareness month!

Pebbles of Hope will be hosting its virtual walkathon again this year throughout the month of November, which is Prematurity Awareness Month.  Starting on November 1st and ending on November 30th, participants from around the world will walk anytime, anywhere during the event dates in support of premature babies and their parents. The 5K event will be powered by the Charity Footprints mobile app which allows walkers to set distance goals, solicit pledges from sponsors, and track their miles using the GPS technology on their mobile devices.

There is a registration fee of $10 to participate in the event, but all pledges and sponsorships will not be converted into donations until walkers complete their 3 mile goal.  If you are not interested in walking, but want to support the cause, you can sponsor the walk by clicking here:    Sponsor My Walk

Participants in the Washington, DC metropolitan area that are interested in walking together will meet at Barcroft Park in Arlington, VA at 11:00AM on November 11th to complete their 5K walk.  We also encourage individuals to sign up as ambassadors to host local walks in cities around the world.

All proceeds from the walkathon will go towards Pebbles of Hope’s Adopt a Family Initiative in which we identify NICU families in need and provide them with baby supplies, one-on-one mentoring and connections to local service providers for additional support.

To register for the event, visit Registration Link , or contact fundraise@pebblesofhope.org for more information, to sponsor the event, or to serve as an ambassador to host a local walk in your city.

Pebbles of Hope shares a conversation with Dr. Bonita Wilson to kick off its Bridging the Gap podcast

Today, Pebbles of Hope launches its first podcast series, Bridging the Gap, in which we explore the health disparities that affect NICU families.  Each episode features an interview with a preemie parent, healthcare professional, or other relevant expert for a candid one-on-one conversation on some of the most pressing issues faced by parents in underserved communities navigating the journey of prematurity.  The series is hosted by our Executive Director, Cheryl Chotrani, and in our first episode, she sat down with Dr. Bonita Wilson, a pediatric allergist and Pebbles of Hope board member, to discuss what it means to be underserved in the NICU.  A condensed version of our conversation is below.

Please tell us about your career path as a physician and specifically highlight any experience working with underserved communities.

Dr. Wilson: I began my medical education at Howard University where I earned my medical degree.  From there, I went to Boston and trained at Boston City Hospital doing pediatrics.  I later served as Chief Resident at DC General Hospital in Washington, DC and completed my allergy fellowship at Howard University.  So, I’ve had quite a bit of opportunity to work with underserved communities in the city.  During my fellowship, I set up allergy clinics in the Caribbean and had an opportunity to work in underserved areas in the Caribbean as well.

How do you define underserved populations?  Does that simply mean “low-income” or are their other definitions or reasons for being underserved?

Dr. Wilson: A community can be classified as underserved if they do not have access to the optimal resources available for whatever medical condition they need to be treated for.  It can be due to geographical isolation which may affect families that do not live in close proximity to a well-equipped hospital.  Or, it can be related to lack of access to health insurance, which may prevent individuals from seeking medical care.  And it can also relate to communities that are low-income, in which the population may not be able to afford the financial cost of adequate care.   An individual can live in a location with multiple hospitals, but if the only hospital accessible to them is not well-equipped to adequately address their medical needs, they would be considered underserved.

What does being underserved mean for a community and how specifically does it affect NICU families?

Dr. Wilson: As part of my work with Pebbles of Hope, I’ve had the opportunity to work with hospitals across the country in all different areas.  Hospitals that have neonatal intensive care units (NICUs) to treat premature babies and other babies that require intensive care are classified according to the level of care they are equipped to provide.  Level IV is the highest level, which would mean that particular hospital is equipped to care for the sickest babies in their area.  In the entire state of Mississippi, there is only one Level IV NICU.  Consequently, when very early premature babies are delivered, they are typically transported to this one Level IV NICU from all over the state.  So, this NICU ends up serving three to four times the number of babies that they would be reasonably equipped to serve, which results in overcrowding and understaffing.  So, even at a hospital with a high degree of resources available, they are not always able to provide the complete educational support that patients and families may need in a timely manner.  Mississippi is not the only state in this country that has only one or a limited number of Level IV NICUs, so this is an issue that affects multiple populations in the US.

How can organizations like Pebbles of Hope or other non-profits tackle some of these disparities and help bridge the gap?

Dr. Wilson: No one organization will be able to completely solve this problem, but what we can do is help provide a means to educate NICU parents and to make that education available throughout the country and to communities in other parts of the world.  We can make them aware of the resources that are available in their area and give them advice on the things that they can do to improve their health as well as the health of their babies.  Education is critically important because parents, regardless of where they live or where they’re from, generally have a common goal of making sure their babies are healthy and well cared for, and education empowers parents with the knowledge and tools for them to take an active role in furthering the health and development of their children in an effective way.

Can you talk about some of the work you’ve done with Pebbles of Hope that you think is helpful in addressing the needs of underserved communities?

Dr. Wilson: I am particularly excited to talk about Pebbles of Hope’s Adopt a Family program in which we are matched with parents of premature babies that have been identified as having low income status.  We receive in-kind donations from Buy Buy Baby and other donors and provide supplies to these families to help them prepare for bringing their babies home from the NICU.  We are able to give them things like cribs, car seats, bottles, clothing and breast pumps and it can make a huge difference in providing them with hope and enabling them to provide the care their babies need when they get home.  We also provide these families with mentoring and access to all of our educational resources. Some of the people we’ve served through this program have recently immigrated to this country with nothing, or they are low-income and don’t have the means to purchase these supplies themselves.  So, I am thrilled to be able to participate in this program and to give these families something to help them with their babies.

The full audio copy of this episode as well as all other episodes of the Bridging the Gap podcast is available on iTunes, Google Play or wherever you get your podcasts.

Finding Gratitude in the NICU

By Cheryl Chotrani

 

Having a child in the NICU is one of the most challenging experiences a parent could face.  Watching your child fight for his or her life every day is scary and overwhelming, to say the least.  When my son was born 16 weeks early, weighing 1 lb 2 oz, my entire world was turned upside down.  For weeks, I didn’t know if he was going to survive.  During his nearly five month NICU stay he suffered from respiratory distress, a collapsed lung, a bowel perforation, two surgeries and more blood transfusions and medications than I can count.  Yet, despite it all, the emotion that helped carry me through that experience was a sense of gratitude.

 

Throughout my son’s NICU journey I kept a daily gratitude journal.  I noted down anything that brought me joy throughout the day and any positive developments in my son’s condition.  In spite of the fear, the heartache, and the sense of hopelessness that were recurring feelings during those months in the NICU, it was comforting to end each day recognizing that I still had plenty to be grateful for.  Now, nearly four years after my son came home, I’ve looked back through that journal and was reminded of the gratitude that kept me going through one of the darkest periods of my life.  Here are the themes that stood out among the things I was most grateful for during that time.

 

        1. First and foremost, I was grateful that my son was alive. When my water broke 15 weeks into my pregnancy, I was told that the odds were slim that my baby would survive.  When I finally delivered at 24 weeks, the doctors did not expect him to make it out of the delivery room.  Then, in the NICU, there were several times when we came very close to losing him, particularly in the early days.  As long as my son was alive, there was still hope that he would come home one day.  Unfortunately, way too many NICU families don’t ever get to bring their babies home, so I knew that each day I had with my son was a blessing.

         

        1. Second, I was fortunate to have a supportive family that helped me get through the emotional rollercoaster of that time in my life. While none of my extended family had personally experienced having a child in the NICU, I appreciated their calls, words of encouragement and home-cooked meals.  Having a supportive network of family and friends can make all the difference for powering through the hardest days.

         

        1. I was extremely lucky to have a job that gave me the flexibility I needed to visit the hospital every day to see my son. I was also pumping and was fortunate to have a dedicated private room in the office to pump breast milk every three hours.  The income provided through my job also gave me the resources I needed to cover transportation costs, medical expenses and pumping supplies.  Many preemie mothers are unable to go back to work while their child is in the NICU, or have jobs that don’t provide the flexibility and support they need.

         

        1. My son is now four-years-old and thriving. I recognized, even during his time in the NICU, that a large part of his positive outcome was due to the fact that he was born in a well-resourced location at a hospital with a top-notch NICU.  It is estimated that over 1 million premature babies do not survive each year and that over 75% of those deaths are preventable.  Many times, simply being born in a certain location or at a well-resourced hospital can mean the difference between life and death.  I was fortunate that my son had at his disposal the best that modern medicine has to offer.

         

        1. Lastly, I was immensely grateful for the NICU doctors and nurses that dedicated their time and attention towards saving my son’s life. I can recall more than one instance in which the quick reaction by a medical professional prevented a potential catastrophe in my son’s health.  Without the special care of the amazing NICU staff, my son would not be here today.

 

As difficult as having a child in the NICU can be, it was helpful for me to recognize that there is almost always something to be grateful for.  Just holding on to these positive thoughts provided a small sense of comfort.  Being grateful does not mean forgetting about the pain and the challenges that come along with the NICU experience, but rather reminding yourself that there are positive things in your life that can help you persevere through an incredibly hard time.  It was also important to me that I take time to acknowledge that many other families are not as fortunate to have the support and resources they need to manage the stress of the NICU.  That’s what inspired me to start Pebbles of Hope so that I could give back by providing support to NICU parents less fortunate than me.  For a parent with a baby in the NICU, even small acts of kindness can be a tremendous help.  By reaching out and providing a helping hand to another family, it’s possible to extend the gift of gratitude to others at a time they need it most.

When Pumping for a NICU Baby Is A Struggle

By Cheryl Chotrani

If you’ve ever given birth to a baby that spent time in the NICU, you were probably reminded over and over again by your baby’s doctors and nurses that breast milk is best.  The health benefits of breast milk for babies, especially those born prematurely, are well documented and supported by years of solid medical research.  If a mother of a premature baby is able to provide breast milk, it is by all means the best thing to do.  Unfortunately, breastfeeding or pumping for a baby born too soon is not always so easy to do.  Many mothers have difficulty building up their milk supply, which can be all the more challenging to accomplish when dealing with the added stress and trauma of the NICU.  Other mothers have to go back to work soon after their baby’s birth or have other children at home that demand their attention in addition to having a child in the hospital, leaving little time to dedicate towards pumping.  There are many other reasons why providing breast milk for a premature baby can be challenging, and in some cases, not feasible.

When my son was born 16 weeks early just over 4 years ago, I dealt with many of these issues.  Because he was so small at birth, I was not able to hold him until he was almost 6 weeks old.  Without the physical connection with my son, my milk supply was slow to develop at first.  On top of that, I went back to work three weeks after my son’s birth so that I could take maternity leave once he came home.  Juggling work, daily visits to the hospital and trying to pump every three hours at the office and through the night was no easy feat.  But somehow, after the first few weeks, my milk supply started to improve and I was able to continue pumping for seven months.

If you’re a NICU mom having trouble providing breast milk, you are not alone.  But, if you want to continue trying to make pumping or breastfeeding work, there are some things you can do.  Here are some of the things that worked for me while I was pumping for my son.

 Find out all of your options

Many hospitals provide a lactation room for NICU moms as well as access to a refrigerator or freezer for storing breast milk, and many employers are required by federal and/or state laws to provide their female employees with a comfortable place to pump during the year following their baby’s birth.  You may also be able to get a breast pump covered through your health insurance, although it may not be a hospital-grade pump.  But if your baby’s hospital is under-resourced, you don’t have health insurance that provides breastfeeding benefits, you work at a small company and/or you don’t qualify for government assistance, getting everything you need to pump – the pump, storage containers, refrigerator/freezer space and a comfortable space – can be challenging. But with a little resourcefulness, you may be able to find ways to get what you need.  In my case, I was pumping both at home and at work and it was cumbersome to carry the hospital-grade pump I was using at home into work every day, especially since I was using public transportation for my commute.  I found out that there were four other mothers at the time who were also pumping at my office and a few other women with babies on the way.  We all collaborated to jointly purchase a pump for the office, which was later reimbursed by the company, and as long as we all brought our own flanges and storage containers, we could share the same pump.

Get support from others

Making pumping work requires the support of your family, friends and co-workers.  Let all the important people in your life know that you are pumping and ask for the time and space you need.  Ask family members to help with cleaning pumping supplies, borrow refrigerator or freezer space from friends and neighbors, and request that co-workers schedule meetings to accommodate your pumping routine.

Herbal remedies are not a quick fix, but may help some

There are many herbal products on the market that promise to increase your milk supply.  Many of them include herbs like fenugreek, alfalfa, raspberry leaf, blessed thistle and fennel.  Not all herbs are safe for preemies, so check with your baby’s doctor before taking any herbal remedies.  While I was pumping, I enjoyed drinking Mother’s Milk Tea, which you can get at Whole Food’s or Amazon.  I’m not sure if it helped increase my milk supply at all, but if nothing else, a placebo effect may have been beneficial.

 Take care of yourself

In addition to getting as much sleep as possible, experts recommend drinking lots of water and making sure to eat a healthy and balanced diet.  But, the most important thing is to de-stress and to do what is best for you and your health, even if that means that you stop pumping earlier than you originally planned.  Just remember that any breast milk, even a small amount, is helpful for your baby.  So don’t worry too much if you’ve done all you can and it’s just not working.  Having a baby in the NICU is one of the most harrowing experiences any mother could go through, so it’s ok to give yourself a break.

These are just some of the things that worked for me, but every mother’s situation is unique.  If you’re trying to provide breast milk for a preemie, we’d love to hear your stories and tips.  Reach out to us at info@pebblesofhope.org or connect with us on Facebook or Twitter.

The Preemie Experience Doesn’t End After the NICU

By Cheryl Chotrani

 

The day my son came home from the NICU, 140 days after his birth, was most certainly the happiest (and most overwhelming) day of my life.  His time in the hospital left me emotionally drained as I watched him fight for his life every day.  I anxiously awaited every milestone that would bring him closer to home.   When he was discharged after a nearly five month stay, I was ready to move forward with starting some semblance of a “normal” life with my family and putting the NICU experience behind us.

Little did I know, the NICU was just the beginning of my son’s experience with prematurity.  Now, almost four years later, my son still receives weekly physical and speech therapy, has difficulty with coordination and balance, and struggles with body awareness to the point that potty training seems like an impossible feat.  Some of these issues are things he’ll likely be dealing with for most of his life.

I realize that these challenges are minor compared to what many other preemies face, and pale in comparison to the prognosis I was given when my son was first born.  I am extremely grateful for that.  But since my son appears to be perfectly healthy, it can be difficult explaining to his family, friends and teachers why he still needs extra support and attention.  Many who have not experienced or been exposed to premature birth may think that the prematurity journey ends once the baby comes home from the hospital.  But, the reality is, many preemies face long-term challenges as a result of their early birth.  On top that, parents often need time to recover from the NICU experience themselves.

Here are a just a few of the ways in which my son’s prematurity has affected my family after the NICU:

 

Never-ending appointment schedule

When my son first came home, he saw five different specialists and two therapists, in addition to his pediatrician, to monitor his lungs, eyes, brain, bones and overall development.  All of this added up to a schedule of 5-6 medical appointments each week.  While his schedule of doctor’s appointment is much less intense now than it was when he first came home, he still maintains a heavy schedule of therapy and physical activities designed to help him with his speech and gross motor development.  In addition to the time commitment involved in taking my son to these appointments, there is also the added expense for gas, copays and therapy sessions not covered by insurance.

 

Coordination difficulties

All preemies, particularly those born at earlier gestations, are at risk for developmental delays and learning challenges as they grow older.  My son continues to struggle with speech, coordination and body awareness.  With therapy, he is making great progress in all of these areas, but is still unable to communicate as effectively as his peers and finds it difficult to keep up with other kids on the playground.  I can accept the fact that he is likely not destined to become a star athlete, but my primary concern is how his challenges with balance and overall clumsiness will impact his self-esteem and ability to participate in physical activities with other children as he progresses through school.

 

Ongoing emotional impact

In addition to the challenges preemies face as a result of their prematurity, parents are often dealing with the emotional aftermath of the NICU experience for years afterwards.  Many NICU parents struggle with post-traumatic stress disorder (PTSD), which does not always manifest itself right away.  Sometimes, PTSD symptoms may start or recur months or years after the initial trauma event.  As for me, while I was never diagnosed with PTSD,  I continue to be extra cautious when it comes to my son’s safety as there remains an unshakeable fear that he could somehow still be taken away from me.  That fear has also spilled over into other areas of my life as a result of a heightened sense of how fragile life can be.

 

These are all challenges that my family continues to deal with despite the fact that my son is healthy and avoided many of the serious complications often associated with prematurity.  Many preemie parents experience much worse.  This underscores the importance of continued support and resources for NICU families well after discharge, even into the preschool and elementary school years.  State-run early intervention programs are critically important and help to address some of these needs, but often services are not available beyond the first 2-3 years of life and generally do not address all of the medical, emotional or financial challenges affecting the child or the family.  So, if you have never had a preemie, but have a family member, friend, co-worker or student who experienced premature birth or is a preemie themselves, take some time to understand why they might still need your support well after the NICU journey is over.

 

 

The Pebbles of Hope “Adopt a Family” program has launched for Prematurity Awareness Month

This November 2016, Pebbles of Hope has launched its “Adopt A Family” program to provide supplies and mentoring to low-income families with premature babies in the NICU.  In collaboration with hospitals in the Washington, DC area and other parts of Virginia and Maryland, we identify families in need who are preparing to bring home their babies from the NICU for the first time, deliver supplies to their home and match them with a mentor who can advise them on topics such as feeding and nutrition, preparing the home, and safe sleep practices.

Last week we delivered over $700 worth of supplies to the first participant in the program — a single mom whose baby was being discharged after a 2 month stay in the hospital.  We will continue to accept applications for additional participants through our hospital partners for as long as supplies are available.

We’d like to thank Buy Buy Baby for becoming our first retail partner and donating all the baby supplies that families receive through this program.  Already we have received over $7,000 worth of goods, and we plan to continue receiving and distributing items to families through this partnership and through other retail partners we identify over time.

Register now for the Pebbles of Hope Virtual Walkathon in November to support prematurity awareness month!

Pebbles of Hope will be hosting its virtual walkathon again this year throughout the month of November, which is Prematurity Awareness Month.  Starting on November 1st and ending on November 30th, participants from around the world will walk anytime, anywhere during the event dates in support of premature babies and their parents. The 5K event will be powered by the Charity Footprints mobile app which allows walkers to set distance goals, solicit pledges from sponsors, and track their miles using the GPS technology on their mobile devices.

There is a registration fee of $10 to participate in the event, but all pledges and sponsorships will not be converted into donations until walkers complete their 3 mile goal.  If you are not interested in walking, but want to support the cause, you can sponsor the walk by clicking here:  Sponsor My Walk

Participants in the Washington, DC metropolitan area that are interested in walking together will meet at Barcroft Park in Arlington, VA at 11:00AM on November 19th to complete their 5K walk.  We also encourage individuals to sign up as ambassadors to host local walks in cities around the world.

All proceeds from the walkathon will go towards Pebbles of Hope’s Adopt a Family Initiative in which we identify NICU families in need and provide them with baby supplies, one-on-one mentoring and connections to local service providers for additional support.

To register for the event, visit Registration Link , or contact fundraise@pebblesofhope.org for more information, to sponsor the event, or to serve as an ambassador to host a local walk in your city.