In Hope’s Shadow: Assisted Reproductive Technology and Neonatal Intensive Care

ABSTRACT

While assisted reproductive technologies (ART) have helped countless men and women become parents there are births that cast a long shadow. This article looks at ART from the little described vantage point of the Neonatal Intensive Care Unit (NICU), where newborn babies struggling to live meet their parents for the first time. Babies conceived through ART where more than one embryo is transferred are more likely to be multiples and multiple births are more frequently premature necessitating a NICU stay that can be long and arduous both for the infant and for the parents, often compounded with uncertain developmental outcomes. The technological salvation promised by ART is contrasted with the life and death realities of the NICU, including the despair, guilt and shame that NICU parents can feel. The complexities of how to counsel these hopeful prospective parents are discussed. Voice is given to the traumatic experience of these parents both in the NICU and then home.

Notes

1. There are many other stories that impact the resilience of the family that are also silenced—prior losses of all kinds, psychiatric histories, etc. Our focus here is the reproductive story that precedes this birth.

2. Barbara Nies, a maternal fetal medicine doctor says of the infertility doctors, “if they did the obstetrical care, maybe they would think twice before they do some of the things they do” (Mundy, 2007). Institutional dissociation and compartmentalization parallels and reinforces individual dissociative thinking.

3. A procedure known as ICSI (intra-cytoplasmic sperm injection) is one instance of these. See for example, “Sperm injection procedures may increase birth defects” (Waknine, 2012) or “Injecting sperm more popular but does not improve outcomes” (Henderson, 2015).

4. Sorenson (20) makes an evocative distinction between parents of a healthy newborn who “behold” their baby, and NICU parents, bereft of the sensual connection, who follow the medical team and scrutinize their critically ill or premature baby.

5. Parents often feel a need to “protect” themselves from well-meaning phone calls and emails, not able to get people to understand what this experience is like and feeling envious of friends’ easier pregnancies and births. “Seeing strollers on the street puts me into a jealous rage. I can’t even go to my best friend’s baby shower and then I get angry at myself for not being able to be happy for others.”

6. If trauma atomizes temporal experience, which it does, we, in our consulting work, help parents develop a narrative of their experience; all that came before and what is transpiring now, giving voice to their fears, guilt and shame, and questions about the future, enabling them to more fluidly engage with their babies in the present. For fuller descriptions of our work with parents and nurses, see Kraemer (2006; 2012), Kraemer and Steinberg (2006, 2012, 2016), Steinberg (2006, 2012), and Steinberg and Kraemer (2010).

7. Leckman, Feldman, Swain, and Mayes (2007) empirically investigated Winnicott’s primary maternal preoccupation. They found that mothers of full-term, healthy newborns spend 14 hours a day preoccupied with their babies, immersed in their care and highly vigilant to their needs.

8. We call this the “silent crisis” of the NICU and it is curiously difficult to engage the staff’s interest in these families.

9. In 2010 the cost of an ART cycle in the United States was $13,775. In Canada it was $8,740; in Japan, $4,012; and in Belgium, $3,109 (Connolly, Hooren, & Chambers, 2010).

10. The morbidity rate approximately doubles for every week that a baby is below 38 weeks gestational age and the infant mortality rate is 3 times higher than the rate among term infants (Loftin et al., 2010).

11. There is yet another disconnect. As a critical care setting the NICU is focused on acute crises. In daily updates doctors may say the baby is ‘fine” meaning there are no acute treatment needs. For those parents whose infant has multiple and complex long term problems that are likely to compromise development, this is deeply confusing (Kraemer & Steinberg, 2012; Steinberg & Kraemer, 2010).

12. Parents report that the absence of relational and informational continuity among the treating doctors leaves them with a lack of confidence that their child’s care is connected over time and place (Miller et al., 2009). As medicine, and each subspecialty grow more complex and technical they become increasingly siloed from each other.