Five years ago, my world turned upside down after the birth of our first son. What should have been the happiest day of our lives turned into one crisis after another, a transfer to a hospital two hours away, and a stay in the Neonatal Intensive Care Unit (NICU) . I spent a lot of time blaming myself, thinking there was something wrong with me, myself, my body. I was numb for quite a while but even those closest to me were not able to tell—because that’s what we tend to do as women. That is what we have been taught to do from a young age. Internalize, but make it look pretty on the outside.
The birth of our second son was a scheduled C-section. Controlled. Planned. No room for error. What was supposed to be my calm, healing birth resulted in an even longer NICU stay than with our first. The things I saw during our youngest son’s NICU stay will forever be burned into my brain. The sights, sounds, and smells didn’t leave once we left; the NICU seemed to follow us home.
Before I started my journey into parenthood, I knew that the US trails behind the rest of the world in postpartum care. I knew that we are the only industrialized nation without paid maternity leave, how we are a society that values individualism over collectivism, and how this is not conducive to supporting a new mother.
I also knew that in almost every other culture around the globe, strong postpartum traditions focus on community or family involvement to aid in postpartum recovery and bonding between mom and baby. In China, mothers have a month-long resting period after they give birth. The mother is supposed to rest, eat nutritious food, and do nothing else. Many Latin American countries follow a similar tradition. For the first six weeks postpartum, family members assist with meals, household tasks, and caring for other children in the home. Mothers in Finland leave the hospital with a box of necessities for their baby, including clothes, diapers, and toiletries.
In the US, the only protection that new mothers have is the Family Medical Leave Act (FMLA) which provides for 12 weeks of unpaid time off following the birth of a child. A staggering 40 percent of women in the workforce do not qualify for FMLA, and therefore have no legal protections as new mothers. An alarming one in four mothers in the US returns to work within two weeks of giving birth.
The US spends the most money in the world on healthcare per person; however, we typically rank last in maternal outcomes when compared to other developed nations. All such countries with the exception of the US guarantee at least one visit at a week postpartum. Many have healthcare options that cover home nursing visits and pelvic floor physical therapy. The World Health Organization recommends two full assessments of the mother the day she gives birth, and at a minimum three additional visits during her postnatal period. Most US insurance policies cover one postnatal visit at six weeks postpartum and nothing else.
As a result, the United States has a maternal mortality rate that is more than double that of most other developed nations. Most US maternal deaths are preventable, but have been steadily increasing since 2000. Most alarming, there is a vast difference in maternal mortality rate according to race and ethnicity. The number of deaths for Black mothers in 2018 was more than two times higher than that for white mothers.
I signed up for motherhood despite knowing all this, but it wasn’t until I became a mother that I truly experienced the lack of social support for new mothers and how that translates into real life. At the time of the birth of our first son, I did not know another soul that had experienced a NICU stay. I knew no one that had to experience the pain of being separated from their child or had to ask a nurse permission to hold their child.
About six months after our second NICU experience I shifted the focus of my career as a physical therapist, and began working in pediatrics in a community-based setting. The children that I work with typically have just been discharged from the NICU. My job brought me into the homes of NICU families as they were just starting to unpack and process their own experience. This is when I learned that my personal experience was not unique, and I began to notice a trend that I was not comfortable with. I have heard countless moms tell me that their baby did not feel like their baby until they brought it home—mothers who expressed the same feelings of isolation that I felt. Mothers who lived far from the NICU and had other children at home they needed to care for, and felt like their heart was being pulled in two different directions. I have heard from families that did not have reliable transportation and were unable to get to their child each day—families that wanted more than anything to show up and be present with their child; but the reality is that most families do not have the resources to stay in a hotel for weeks or months at a time.
I have felt the pain of wanting to be present for my child when I could not. I have seen the studies that show the best way to improve long-term outcomes for both baby and mother is to keep them close and keep them together. When a mother is present for her child during its NICU stay, she is able to bond. She is able to be involved in decisions that direct her child’s medical care, and she learns how to advocate for herself and her child.
In June, 2020 I started The Nest Postpartum Support, a non-profit organization geared towards supporting women and families during their NICU stay. It is an organization focused on changing the narrative around NICU stays: from one that is so often about uncertainty and isolation to one that focuses on community and support. We will do this by providing local lodging, meals, transportation, and emotional support to local NICU families. The Nest is a 501(c)(3) organization with a female-led board filled with strong, brilliant women who I have met along the way and who have all been through their own version of pain, trials, and healing journeys. Because that is who The Nest is for: women who are currently experiencing a raw, painful journey being supported by women who have walked similar paths.
A few weeks ago we launched our very first fundraiser and will begin providing services in October of this year. To do so, we are raising $40,000 in order to provide six months of care. If you are interested in learning more about our cause, volunteering, or donating, please visit our website at www.thenestpostpartum.org.
Paige Raab is an NICU mom and local pediatric physical therapist with an innate passion for supporting women and children.
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