When I was working in early intervention, I worked with two families that had daughters with Failure To Thrive around the same time. Failure to Thrive is the umbrella term for infants who have either medical or environmental conditions that result in the baby being malnourished and underweight.  In some cases, Failure to Thrive is caused by underlying medical issues like Celiac Disease, congenital heart defects, genetic syndromes, food allergies, severe reflux, a tongue tie, or other issues that impact breast or bottle feeding, etc. In other cases, Failure to Thrive results from an infant not being fed enough calories.  This can be a result of poverty or neglect.

Both families sought medical help at the same hospital to address their daughter’s Failure to Thrive.  The babies were ultimately diagnosed with similar underlying conditions. Despite living just blocks apart, with the same high education levels, upper-middle-class income bracket, and similar health insurance, the two families had vastly different experiences.

Adrienne is a light-skinned Black woman with freckles and locks down her back. At the time, her baby, Oneida, had just slightly darker skin and the beginning sprouts of 4C curls on her tiny head. One morning, before the sun came up, Adrienne took Oneida to the emergency room at an esteemed children’s hospital in Chicago.  Oneida was a teeny infant who wasn’t gaining weight and she had spent the entire night before throwing up.  Adrienne was desperate to find out why her baby was so sick. The nurses checked Oneida in, weighed her, and listened to Adrienne describe her concerns about the baby’s constant puking.  She described to the triage nurse how closely she was working with Oneida’s pediatrician to monitor her weight.  The nurses took notes, told Adrienne the doctor would be in to see Oneida soon, and left Adrienne with the baby.  The next thing Adrienne knew, before she even laid eyes on a doctor, a social worker came in to speak to Adrienne.  The nurses had indicated to the social worker they were very concerned about Oneida’s lack of weight gain.  Based on the questions being asked, it was clear to Adrienne that the hospital staff was concerned that Oneida’s parents were responsible for her condition. Eventually, the social worker became satisfied with Adrienne’s answers. A doctor came in to see the family, and eventually, after much advocating on Adrienne’s part, Oneida got the medical care she needed.  This included a referral to early intervention.  Adrienne learned that EI services took place in family homes.  This made Adrienne anxious after the interactions with nurses and social workers at the hospital who suspected she had caused Oneida’s Failure to Thrive. The idea of having a team of White women from a government program in and out of her home made her Fearful.  Adrienne tried to find other qualified feeding therapists who would see Oneida in their own offices but quickly learned that the feeding therapists with the best reputations all worked in EI doing home visits. Despite her reservations, Adrienne welcomed a team of White EI therapists into the family home.

Just a few blocks from Adrienne, Kate and Tom, a white couple about the same age as Adrienne, had a tiny baby named Cora. Cora also wasn’t gaining weight, cried constantly, and threw up most of what she ate.  Kate and Tom went to the same hospital ER that saw Adrienne and Oneida.  The nurses were sympathetic to their concerns about Cora. They assured Kate that the family had made the right decision to bring Cora to the emergency room. The ER pediatrician immediately referred Kate and Tom to specialists.  When the family left the hospital, they were relieved to have appointments set up with specialists and a referral to early intervention for a feeding therapist through early intervention.  When Tom called to set up the initial EI intake appointment, he and Kate were so relieved to learn that EI would take place in their home.  It would make the logistics of scheduling therapy so much easier and they had faith that the EI therapists would give them guidance about how to meet Cora’s needs within their daily routines. A few weeks later, Tom and Kate were relieved when an EI team did a full developmental assessment and found Cora eligible for multiple home-based services.

As Oneida and Tom and Kate’s development therapist, I remember how honest Tom and Kate were about their exhaustion and stress levels and how open they were with me about the stress of managing two children, full-time jobs, multiple weekly therapy sessions, and managing medical debt.  There were days that the house was messy, Cora needed a bath, and Kate was wearing mismatched pajamas covered in baby puke.  I remember our therapy team talking about how Cora’s parents often used our therapy times to shower, work from home, or throw in a load of laundry.  Once, I even sent an exhausted Kate to nap.  They weren’t as physically present as we wanted them to be, but they were trying their best.

Conversely, when I went into Adrienne’s house, she always greeted me with an upbeat smile, the house was spotless, Oneida was always freshly bathed, and Adrienne was dressed impeccably.  At the time, I remember thinking, “Wow.  Adrienne is so together all the time! It’s amazing!”  After the first few sessions, Adrienne was usually working during our session times, and we had to work with Oneida one-on-one sometimes while her caregiver was occupied with household tasks or the other children in the home.  Oneida’s feeding therapist and I wondered if maybe we moved our time to later in the day, Adrienne would be more present in sessions.

Questions for Reflection

1. Use the Layers of Racism Framework to identify how racism showed up in Adrienne’s experiences with the children’s hospital staff.
   1. Based on what you learned in this chapter, how did United States history lay the foundation for these interactions?
   2. What racist ideologies about Black women and mothers did the hospital staff harbor?
   3. The nurse or nurses who reported Adrienne to the hospital social worker for suspicion of child abuse or neglect acted as individuals. Still, they were representing a larger hospital system at the time. What do you think was happening at the institutional level to facilitate the nurses’ actions? What could a large institution like a hospital do to keep individually racist actions from being institutional ones?
   4. What cultural messages have you seen that may have contributed to the nurses’ racist stereotypes and implicit biases?
   5. Earlier in the chapter, Adrienne is quoted as saying, “It’s one thing to walk around the world and in spaces in life as Black people in America…It’s different when you’re already completely vulnerable emotionally and existentially because you got this sick kid and no one knows what’s going on, and you experience the different treatment.” What do you think the cumulative impact of structural racism is on parents like Adrienne, who have to navigate systems while caring for sick or fragile infants?
2. Inviting a team of White women into her home for Early Intervention made Adrienne so uneasy that she attempted to find another option for feeding therapy. What kind of harm do you think Adrienne was afraid the EI team might bring to her family?
3. Likely without their knowledge, Tom and Kate benefitted from White Privilege and “the Power of the Benefit of the Doubt.” Identify the ways that this privilege showed up at the hospital, in their reactions to having home-based early intervention, in the ways that Tom and Kate interacted with the EI team, and in the ways our EI team talked about the level of family engagement in each family.
4. If you are working in EI, identify one family of color and one White family on your caseload that you’ve discussed with your peers at work or supervisor.
   1. What are statements that you have made about each family?
   2. How do these statements demonstrate your implicit biases about each family?
   3. How do you think these biases impact your interactions with each family?

Resources

Articles

What is White Privilege, Really?

I was Pregnant and in Crisis. All the Doctors and Nurses Saw was an Incompetent Black Woman.

Video

https://www.pbs.org/video/racism-in-medicine-1706476434/