Brooke Jones was in her late 20s when she became pregnant with her first child. Employed full-time as a medical assistant in Connecticut, Jones fully expected to work right up until her due date. Jones described her pregnancy as “normal” and didn’t believe she had any symptoms that were significantly worrisome. But that changed when a routine ultrasound at 25 weeks revealed that her amniotic fluid levels were dangerously low. Shortly after, medical professionals realized Jones’ blood pressure had spiked “through the roof,” she told Prism. She was diagnosed with preeclampsia and was admitted to the closest hospital for immediate treatment. 

“They told me I might give birth that day,” Jones said. She was subsequently transferred to Yale New Haven Children’s Hospital, where she was treated for a host of other complications, including fluid buildup in her lungs, which meant Jones had to go on medical leave immediately. “I was on autopilot,” she said.  

After two weeks of strict hospital bedrest, Jones gave birth to her baby boy at 27 weeks via an emergency C-section. A micro preemie, he weighed only 1 pound, 8 ounces at birth. Earlier in her pregnancy, Jones had carefully thought about her maternity-leave schedule, finances, childcare logistics, and more, but suddenly she needed a whole new plan. 

But as Jones discovered, balancing medical care, a lack of work leave and the need for aftercare support and mental health counseling as a caregiver often proves challenging for families with preemies. Jones’ son spent four months in the neonatal intensive care unit (NICU), where doctors treat sick and premature newborns, but her maternity leave only lasted six weeks after he was born, so she had to go back to work long before he was released from the hospital.  

In search of emotional and mental health support

Women of color like Jones, who is Black, compose a significant number of parents who give birth prematurely. According to the March of Dimes, over 380,000 babies are born preterm every year in the U.S. about 1 in 10 of every live birth. Black and Indigenous women are 60% more likely to give birth preterm than white women.

For the families of preemies, the whole birth experience can be fraught. Often, preemie caregivers aren’t given a lot of time to process that their baby may have short- and long-term medical, developmental, and other complications that require a NICU stay, high-risk surgeries, and other medical procedures. 

Additionally, caregivers can feel overwhelmed and experience a wide range of postnatal mental health issues, including depression, anxiety, guilt, and NICU-specific PTSD. 

“The caregivers’ primary need is emotional support. Prematurity is something that is a surprise, and it has a very traumatic effect on the family,” said Tina Tison, executive director of the Tiny Miracles Foundation. The Connecticut-based nonprofit partners with several hospital NICUs in the area to provide counseling, mentoring, and socio-emotional support to preemie caregivers. Jones received peer mentor support and financial assistance from The Tiny Miracles Foundation after the birth of her son, including during his lengthy four-month hospitalization in the NICU.

“Any caregiver takes comfort in knowing that they are not alone,” said Tison. 

Aftershocks of the pandemic continue to impact caregivers well after their baby has been discharged from the NICU, according to Dr. Angelica Moreyra, an expert in perinatal mental health at the Children’s Hospital in Los Angeles. 

“There is currently an enhanced need for advocacy for our families that we serve due to environmental stressors that create barriers for caregiver presence in the unit such as public transit … changes in school and child care options, increased financial, occupational, and housing instability, and more,” Moreya told Prism. “When caregivers encounter barriers in being able to present in the unit, it impacts the nature of our services, as we are focused on supporting bonding/attachment between caregivers.” 

Balancing work and care

Apart from the mental and emotional strain, the economic impact of having a preemie can also be significant. According to the March of Dimes, the average NICU bill starts at $65,000. But depending on surgeries, medical procedures, and other complications, many families are expected to pay hospital bills that are hundreds of thousands of dollars or higher. For many, access to health insurance or emergency state health insurance for preemies is crucial. However, more than 2.2 million women in the U.S. live in “maternity care deserts” where families often lack access to necessary prenatal care or don’t have health insurance to cover the costs. 

Prematurely born babies are eligible to receive Medicaid and Supplemental Security Income through Social Security. Regardless of a parent’s income level, state insurance typically covers nearly all of the child’s NICU hospital bills, surgeries, post-discharge medical treatment, and other medical and mental health services for both the caregiver and the baby during their first year.  Speech, occupational therapy, physical therapy, and other rehabilitative services are typically covered either through insurance, early intervention, and occasionally through Department of Education public education services after the age of 3-5, depending on the state. However, the process for access to these services is fraught with governmental red tape, making it difficult for caregivers to access.

Even as families face mounting expenses, without extra paid leave caregivers of preemies can find it difficult to hold onto a full-time job given the need for medical appointments, early intervention services, special education services, evaluations, operations, and other treatments for medical issues preemies may struggle with even after “graduating” from the NICU. While Jones’ son’s medical bills and her mental health care were covered by state insurance, her husband ultimately left his job to manage their son’s care and medical appointments.

Working toward policy shifts

As Jones and her husband have looked toward the future and considered having another baby, they’ve become doubtful about the financial feasibility. Without the same state Medicaid services, more paid family leave, and the ability to take time off work for medical appointments, Jones said she was unsure they could afford another child. Her family is far from alone, and advocates for families of preemies argue that a number of policy changes need to be put in place to provide caregivers the support they need, including ensuring universal access to public health insurance programs and a minimum of 12 weeks of paid family leave, with more for families of babies with more significant health and developmental needs. March of Dimes is also pushing for the elimination of racial and geographic disparities in prenatal care and expanded access to coverage for doula and midwifery support to offer caregivers more options both during and after birth. 

If she could wave a magic wand around government policy changes for family caregivers, Jones told Prism: “Let us have our time as caregivers with our children. For me, I only got six weeks. Some people are allowed more time. But as a law, I wish it was implemented to give mothers and fathers the [paid] time we need with our kids.”