4 out of 5 stars
Science writer Jeanne McDermott's second son, Nathaniel, was born with Apert syndrome, a genetic craniofacial condition that results in a towering skull, a sunken face, and webbed fingers. McDermott and her family were immediately plunged into the world of neonatal and pediatric intensive care, as Nathaniel endured several surgeries throughout his childhood.
Any parent who has had a child with a fragile medical condition will be able to relate to some of McDermott's agony as she and her husband struggled with critical decisions for her infant son. Not only was I drawn to this book because of my experience birthing an extremely premature baby, but also because I was born with a cleft lip and palate and endured multiple surgeries as a child, in addition to rude stares.
They struggled with a name choice: should they use their intended name, Nathaniel, because everything they had imagined for this baby had suddenly changed. (We, too, debated whether to use the name we had chosen when Christopher was born, but in our case it was because we didn't know if he would live or die.)
I could relate to her dedicating herself to the baby's health through her pregnancy, being "obsessed with the baby's well-being, aware that every sip, every bite, every chance to put my feet up had been for him." And realizing that she couldn't protect him in the hospital, where he needed her the most. And sending her husband to the NICU in her stead, "Pleased that he could do what I could not, but as soon as he vanished down the hallway, I wished him back." I felt the same way when Chris was born. Since I was recovering from a c-section, Mike was much more mobile than I was and able to visit the NICU more often and easily. I've read that NICU dads bond more equally with their babies, since with a normal birth, the mom is the primary caregiver if she is nursing. In the NICU, the playing field was leveled.
On the night of Nathaniel's birth, McDermott expressed her worst fears to a kind night nurse. "I'm scared that Nathaniel will live at home forever. I'm scared that kids will tease him and no one will invite him to a birthday party." I recall Chris' first surgery, when he was still a pound and a half--it was a heart surgery--and a kind nurse asked me what I feared the most. It felt cathartic to express that fear (that he would die), and I was grateful for her reassurance that she'd never seen a baby die from this type of surgery.
McDermott voluntarily participated in a birth defects study, but while she was in the midst of being asked all sorts of probing questions, it started getting to her. No mother of a child with a birth defect or born prematurely fails to ask herself if it was something she did. Before Chris was even born, my OB said "whatever you do, don't blame yourself." My first thought was: why would I blame myself? But later I went to that dark place as well.
Her happiness at Nathaniel's successes and good-natured personality constantly got hampered by rude comments or stares...or specialists listing her son's deficits and problems. "When our baby was still a newborn, we got a 20-page pamphlet that spelled out, in small print, all the things that might go wrong." This began the day Chris was born and continued for many years. One thing that stood out was that we were told he was falling behind when he couldn't cut with scissors at age 2 or 3...even though he'd never seen a pair of scissors in his life (who gives a 2-year-old scissors?). One kidney doctor tried to convince us to put him on growth hormones because he was convinced Chris would be short (because it took him so long to "catch up"). It's very depressing as a parent to have everyone focus on your child's deficits instead of his victories.
During one of Nathaniel's surgeries, his parents heard a sharp, primordial women's scream and knew that she had lost her child. Losing a child is the most painful experience a person can bear, and when you have a sick child, this possibility is always one's greatest fear. It's hard to escape this in the NICU or PICU when so many parents around us lost their children. We would walk into the NICU and see an empty bed where a baby had been the day before, and we knew the baby had died. One older preemie went home healthy and contracted RSV, returned to the hospital, and died.
Nathaniel's parents donated blood, because it felt like one of the few things they could do to help him, but the blood bank lost it. "It was one of the few times that I completely lost it: I screamed hysterically, 'you lost our blood!'" In Chris' case, my mom donated blood for him...but someone at Red Cross left it out overnight, ruining it and forcing us to use a stranger's blood instead.
McDermott's reaction to her son's brand new, first-day-on-the-job nurse reminded me of how I felt when Chris had one of his worst crises and he had a rough, new-to-us nurse who I felt was incompetent and clumsy. Of course, Mike charmed her...but I stubbornly refused to warm up to her. Later during his stay she tried to convince us that he'd developed an addiction to morphine...not very comforting to parents to hear!
After Nathaniel's first surgery, they felt desperate to get him off the ventilator. I remember the agony of Chris finally coming off the vent at 6 weeks--and seeing his face for the first time!, only to have to go back on it when he acquired a life-threatening infection. It felt like going backward.
As Nathaniel's surgeries added up, McDermott found refuge in "Baby Group" (a group of parents organized through Early Intervention). "It was powerful to simply congregate with other mothers whose babies had special needs..." I too found the comfort of speaking to other parents in the NICU--both during that period and afterward--to be my lifeline. That's why Mike and I have volunteered to help other parents over the past 14 years. No one else can truly understand the pain and agony of this experience unless they have been through it themselves.
Nathaniel (now Nate) was born in 1990, so I was curious to read about how he'd fared, now that he is 20 years old. According to my internet research, he graduated from high school, where he played ultimate frisbee and worked on the tech crew in drama productions. He also served in the peer leader program as an advocate to other students. He was one of three seniors in his high school chosen to receive the Massachusetts Association of School Superintendents Award for academic excellence. He is now attending the University of Hartford and plans on a career in math/business and hopes to be a disability activist. I'm sure he is an inspiration to other children and families affected by Apert syndrome.