My rating: 5 of 5 stars
First off, this book is not for everyone. And it's certainly not going to be five stars for everyone. But for a survivor of the NICU or PICU, a parent who has seen his or her child fighting for life, and a parent who's had to face down the medical establishment and sometimes win and sometimes lose, it's beautiful, a tear-jerker, and poignant. One reviewer commented that no one of child-bearing age should read this book. It could completely terrify prospective or new parents. But it all depends on one's perspective...and how one sees the world. As a mother of a 24-weeker myself and a NICU survivor, I found this book to be very touching, unflinchingly honest, and deeply bittersweet.
Vicki Forman is the mother of fraternal twins, Evan and Ellie. When she goes into labor around 23 or 24 weeks gestation, she knows all too well what their risks are. She asks that the babies be allowed to die. She didn't want any heroic measures to save their lives. Somewhere deep in her soul, she felt it wasn't worth the potential costs. But the doctors ignored her request and rescusitated the babies.
Ellie lived for 4 days, and Evan survived. But just barely. The twins' birth catapulted Vicki, her husband Cliff, and their daughter Josie, into the world of neonatal intensive care, and the complications that often ensue.
Evan was not one of the lucky micropreemies who escape with just a few minor disabilities. He went blind because of retinopathy of prematurity, had extreme feeding issues, and had a severe seizure disorder that most likely compromised his ability to develop "normally." He also had a serious heart condition.
I had discovered Forman's wonderful way with words through the online ezine, Literary Mama. I read everything she wrote. She wrote about loving Evan passionately, but being acutely conscious of how different he was from other children and what they have lost. I put off reading this book until I was ready, because I knew it would leave me raw...especially because Evan suddenly and unexpectedly died last year from an intestinal blockage, probably connected to his prematurity (scarring from a g-tube). This book does not have a traditional happy ending.
To my husband's chagrin, I dog-eared countless pages in this book to remember passages that resonated with me:
--The doctors often do not mention the lasting complications or lifelong disabilities that micropreemies can face...and that "two babies born on the same day at the same birth weight can have two absolutely different outcomes." We grew well aware of this in the NICU, as other babies appeared to do better than Chris, while others did much worse. In Chris' case, we were told of the high chance of disabilities, but only a few days after his birth. We were pretty ignorant.
--Vicki Forman went into labor in much the same way I did--she ignored small signs that things were wrong, just as I did, and we both felt the resulting guilt of not following those signs soon enough.
--One chapter opens with a description of people and the categories they fall into after a preemie birth: the rocks, the wanna-be-theres, and the gingerbread men. The rocks attempt to do everything they can to provide support and love. The wanna-be-theres want to help but don't know how. They often say the wrong thing. And the gingerbread men--they run, run, run as fast as they can away from you. We knew people in all three categories when Chris was born. Some people we hardly knew were rocks. And some people turned out to be gingerbread men. As our close friends (who lost a 23-weeker after 1 week of life) say, "grief reorders your address book." This is true whether it's grief from death, or grief from loss of a "normal" experience.
--Forman worries about what Evan must feel, lying alone in his hospital isolette, and wondering where his twin has gone. Evan was always nonverbal, so I suppose she never found out if Evan missed his twin in his very core of being. I suspect he did.
--I could so relate to Forman's frustration with the nazi nurse who told her she had to take her daughter to the other end of the hallway on a day when siblings were not allowed to visit (even though they were not visiting, but merely restocking breast milk in the refrigerator). I got so mad at certain nurses for similar reasons. I will never forget those feelings of rage.
--"They say it's your baby, but until you go home it's not your baby."
--I sobbed when I read about the first time Forman saw Evan's bare face (when they extubated him). I too remember the first time I saw Christopher's face without a tube forced down his throat. And how normal baby breaths, baby coughs, and baby sneezes could become.
--I remember how when we first got to start holding Christopher when he was about 6 weeks old, we had to alternate days--an hour per day...and how much I ached to hold him longer than that, every single day.
--I remember seeing some of the monster babies in the NICU and wondering what could possibly be wrong with them--they were so huge! Forman has the same feeling about such a baby and her mom, only to grow close to that family and learn their story, a difficult one, too.
--The many doctors calling Evan "the baby" instead of his name reminded me of one neonatologist who cared for Chris who had that very annoying habit. It bothered me so much that I finally spoke to a nurse about it, and she passed the feedback along to him. Bless him--he started using Christopher's name after that.
--Forman writes about how bizarre that the world can go on around her while she grieves for her baby girl. I could relate to this feeling. I stopped reading the comic pages when Chris was in the NICU. They just weren't funny any more. When women complain about minor pregnancy symptoms or make jokes about wanting their babies to come early, I am not amused.
Vicki Forman and I approached the prospect of having premature babies in very different ways. When I went into premature labor, we were given the option to have a c-section (and give him a 50% chance of survival--although these statistics were, at best, a guess, and no chance of disabilities was mentioned) or to have a vaginal birth and risk certain death. We chose the c-section, and we wanted them to do everything possible to save him.
I believe our approach was due to three factors: (1) our complete ignorance about what we were facing--I believe Forman had a much better understanding of the risks involved, (2) a generally optimistic belief system, and (3) our belief that everything happens for a reason, and that whatever happened was meant to be. If the doctors had told us that he would have a 90% chance of disability, would that have changed our mind? But what is a disability? Wearing glasses? A learning disability? Cerebral palsy? Blindness? It could be any or several of those. No one could predict what would happen.
Even though we approached our children's births in very different frames of mind, I deeply admire and respect the choices Forman made (or tried to make), and even more, her brutal honesty about why she made that choice. This book brings to light one of the many challenges of saving these very early preemies. Parents need to be informed of what's at risk and what the potential cost could be. As much as I didn't want to hear all the scary statistics during the NICU experience, I believe it's important for parents to understand the full picture and how things could turn out--just as they need to understand that these are only statistics and no one has a clear crystal ball. Our son Chris is an excellent example of a baby that no one would have expected to do so well. We have friends whose 24-weekers have serious medical and developmental issues.
The doctors are only there for a short time in these children's lives. But the parents are the ones who are there forever--whose lives are never the same. Forman loved her son passionately, even though at first she did not want heroic measures. Whether she would have made the same choices if she were faced with the same at-risk birth again, I do not know. This book is a wonderful tribute to what turned out to be a lovely, but tragically short, life of her son.
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