80 Grief and Loss Across the Lifespan
Discussion of the LossShortly before Nathan’s birth, Melanie became quite fearful of a second pre-
term birth; she was afraid of what could go wrong medically and was inca-
pacitated at the thought of being discharged from the hospital while her child
remained in the NICU. Melanie felt that Lina’s typical, healthy development
had been a miracle.
When Nathan was born even more prematurely than Lina, Melanie felt
immediate, intense sadness and trepidation, knowing she would go through
the trials of caring for another premature infant. She was flooded with memo-
ries of apnea monitors, formula, and the difficulty of breast-feeding she had
experienced with Lina. Melanie was panicked, thinking of how she would
manage Lina, now age 4, and Nathan alone. Her husband would need to return
to work as the household needed his income during her maternity leave.
When Nathan was diagnosed with a NAIS leading to cerebral palsy and
other enduring motor and cognitive challenges, Melanie felt that her deepest
fears had come true. She was paralyzed by the diagnosis of her infant son,
especially since she was not even aware that babies could have strokes. A pedi-
atric neurologist told Melanie that the elderly and newborn are at highest risk
for stroke (see Nelson, 2007).
It quickly became evident that Nathan would travel a lengthy road before
he would be discharged home. Melanie and Frank were trained by the hospi-
tal to take care of a child with seizures who requires medication, and taught
how to meet Nathan’s nutritional requirements through breast-feeding and
high-calorie formula, infant cardiopulmonary resuscitation, and managing an
apnea monitor. The new parents discovered that for infants who suffer strokes,
there is no immediate treatment except to manage the symptoms as they occur
(see Basu 2014). Melanie and Frank were already aware of Early Intervention
as Lina was offered such a program; however, they were unsure of how and
when to access Early Intervention Programs for Nathan (programs that would
stimulate and monitor his development). This fact was unnerving to Melanie
as she was aware that the caregiving responsibilities would fall on her.
During Nathan’s predischarge time, Lina was cared for by her paternal
grandparents, who did their best to manage their granddaughter’s physi-
cal and emotional needs. Lina was excited to meet her new brother and after
waiting for over a month had great difficulty dealing with the absence of her
parents. She became prone to emotional outbursts and did not want to play
with others in preschool. She regressed to wearing a diaper after having toi-
let trained a year earlier. Melanie and Frank were physically and emotionally
exhausted trying to care for their infant son and their toddler daughter; they
felt immense guilt about her drastically changed behavior. It was apparent
that Lina needed their attention, but so did Nathan.
Over the next month, Nathan gained strength and neared readiness for
discharge from the NICU and Nathan’s family prepared for the expected
developmental challenges he would have in motor, somatosensory, visuospa-
tial, cognitive, executive function and attention, language, and possibly epi-
lepsy (see Kirton & deVeber 2013). Although the exact extent of the damage
to their son’s brain would be difficult to predict, the stroke had caused severe