I have been reading the writer Bonnie J. Rough's charming and evocative blog The Blue Suitcase for some time now and was very excited to receive a copy of her new memoir Carrier: Untangling the Danger in my DNA. I'm in the middle of reading it right now and have to say that it is a moving, riveting read and one that I can hardly put down. As the carrier of a rare genetic condition, Bonnie faced a difficult decision when she and her husband decided to start a family. The book grew out of Bonnie's wish to untangle the complicated details of her family's past, and, as the back of the book says, "Bonnie and her husband find themselves faced with a modern moral crisis."
I am excited today to post this interview with Bonnie and also offer a copy of her book in a giveaway! Please leave a comment below and I will draw a winner this Friday. And to buy a copy of her book, go on over to your local independent bookstore or my blog sidebar where I've posted some of my favorite books. You can click there and go directly to Amazon, I think.
What is the genetic disorder you carry?
Bonnie: That’s almost always the first question I’m asked. People see my dilemma right away—whether or not to risk having a baby with a disorder—and it’s natural to think the answer hides in the set of symptoms. How bad do they seem? The main symptoms of hypohidrotic ectodermal dysplasia (HED) are sparse hair, few teeth, no sweat glands, and a slightly unusual facial appearance. There are often secondary problems, including chronic respiratory sickness and other kinds of infection. HED is X-linked, which means that female carriers (like me) have no symptoms, but may give birth to sons who are fully affected. Compared to many disorders, HED may not sound so bad—and for some affected individuals, it may not be. That was part of what confused me initially, motivating me to learn more about people in my family who had suffered from the disorder—especially my grandfather, Earl. Researching his life story, I discovered how the disorder turned a brilliant man into a tragic figure. It became clear to me that even if HED isn’t directly life-threatening, it can be profoundly life-altering. Dan and I had to decide how far we’d be willing to go in order to keep our children’s lives free from that risk.
What choice did you have?
Bonnie: That question is exactly what makes Carrier so timely. I belong to the first childbearing generation with access to genetic testing for a vast number of known disorders. That means before conceiving, parents can have their DNA tested in order to learn what problems we risk passing to our children. From there, if biological children are still desired, we have some remarkable yet troubling options. There’s in-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD), in which doctors genetically screen test-tube embryos and implant only healthy ones in hopes of creating a successful pregnancy. For many couples, this process is too expensive, too physically grueling, or too emotional. Another choice is to become pregnant the usual way, and then to test fetal cells in the 11th week of pregnancy with chorionic villus sampling (CVS) or in the 15th week via amniocentesis. But then, if test results reveal a problem, a couple might face an excruciating choice.
Bonnie: Carrier is about a modern-day couple grappling with the past in order to take positive steps into the future. This is a journey that almost everyone experiences at some time in life—especially when parenthood looms on the horizon. Carrier is the story of a truthful person searching deeply to find the best solution for a heart-wrenching problem. The specifics of the predicament are mine, but the journey is universal.
How do you expect people to react to this book?
Bonnie: Before Dan and I made our choices, I published a personal essay about our predicament in The New York Times. I was totally unprepared for the flood of e-mails I received. Women and men from all over the country wrote to share their stories. Many offered me comfort, and others thanked me for the solace I had given them as they grappled with their choices. About half of the people who wrote me thought it was perfectly clear how Dan and I should proceed to start a family. One called our in-vitro option a “no brainer.” Many said adoption was the clear choice for us. Others thought we should skip testing and allow fate to decide. Quite a few readers didn’t care what we did, as long as we ruled out abortion. I think the huge response showed how many lives are touched by these issues now. And most importantly, the range of reactions proved that these decision-making processes are deeply personal and unique within every family.
In your memoir, in addition to your own voice, you write in the voices of your mother and your grandfather. How do you justify this as nonfiction?
Bonnie: As I looked ahead toward starting a family, I felt a vital need to examine the past. I needed to understand my grandfather’s experience of HED (he died at age 49, when I was a baby). I also I wanted to explore how witnessing her father’s misery shaped my mother, Paula, as a person. Every family has its unspoken stories, and with my mother’s help, I worked very hard to bring our past to light before I made any choices about having my own children. Using the voices of Earl and Paula alongside my own narration gives Carrier the perspective and empathy I found in the course of my research. Obviously, I had to use my imagination to recreate voices and scenes from the past. But when I was writing Carrier, I wasn’t inventing a new story, which would have been fiction. On the contrary, I focused on recovering a particular story—one that began shaping me and my children long before our time.
Wow. What an interesting story! Isn't it strange how as we gain scientific knowledge, our moral choices become even more difficult? But can lead to better alternatives.
ReplyDeleteI'd like to read this book.
Very interesting. I found out when I was pregnant that I was a carrier for cystic fibrosis, and no one in my family had any clue about this.
ReplyDeleteHi Elizabeth -- thanks so much for posting this. I'm very interested in this book as well. I know about HED because my son Ben has a rare form of ectodermal dysplasia, and HED is one of the more common ones.
ReplyDeleteI've read about lots of kids with HED in a newsletter produced by the National Foundation of ED, and they seem to lead very full and relatively normal lives. The disorder is VERY mild when compared to many genetic conditions and primarily involves a slightly unusual appearance, possible need for dentures or dental implants, and the issues related to overheating because of the lack of sweat glands.
It sounds like Bonnie's grandfather had a real struggle socially with the condition, but I assume that was more than 50 years ago, when any differences caused people to be ostracized. I'd be interested to know whether the author spoke with families through the association about how kids today cope.
When the author in the interview here talks about potentially facing an excruciating decision if you find out prenatally that your child is carrying HED, I just can't wrap my head around how someone would consider aborting a fetus based on this condition.
It really concerns me that with the increase in prenatal genetic testing, there is incredible pressure culturally/socially on parents to prevent differences through abortion. I've heard through genetics counselors that people are increasingly aborting fetuses for cleft lip and palate and club feet, which are treatable conditions.
I had genetic testing when I was pregnant with my second child (after my son was born with a genetic condition) and it wasn't because I felt comfortable with the testing or wanted the testing, but because I feared that people would judge me if I had another child with a genetic condition -- that I had somehow "chosen" to have a child with a disability -- which is ludicrous when the alternative is abortion. At the time I was young and didn't have the confidence in my own beliefs to decline the testing.
I personally would have been happier if genetic testing was never invented and I accepted my children as they came and were given to me.
Thanks for sharing this!
Thank you, Elizabeth, for directing me to Bonnie's blog and her book. I know it is a soul-wrenching decision that people have to make when a known genetic disorder might affect their children. I, however, fully support any decision made in that respect. I've known many people affected directly or indirectly with those choices and with having children with such disorders. Many of the children affected live full and rewarding lives. Many don't. Of those who don't, in many instances their lives create situations for good in those families and in society. I do have a number of people that I will tell about the book.
ReplyDeleteBest,
Bonnie
That is an interesting interview, and I would love to read the book! Enter me! :)
ReplyDeleteI've been waiting to read this book, so either way , I will get to it. I've been following her blog since I noticed it on your list.
ReplyDeleteI went for a recommended amnio with my fifth pregnancy when a fear of problems came up and even that was a decision I waffled on for every hour of every day until the appt. My heart goes out to anyone having to be in this position.
I'm putting this book at the top of my "must read" list. I am halfway done writing a similar book about the decisions my husband and I faced about having kids, IVF, and PGD because I have a genetic bone disorder called osteogenesis imperfecta. Two things struck me about this interview: 1) I too find that people are eager to categorize disorders as severe, mild, life-threatening, non-life-threatening, etc., believing it will be easier to make moral judgments about genetic screening based on those categories. But I don't actually think that such categorization helps. 2) My writing always focuses on people's stories, because I also believe that these decisions are "deeply personal and unique." I'm not saying that because everyone's story is unique, therefore any choice is valid. I think we as a culture need to come up with better ethical guidelines for genetic screening and assisted reproduction; right now, things are basically ruled by market considerations. But I do believe we have to hear and honor people's unique stories in asking these important moral questions. And I'm always grateful when people like Bonnie put their stories out there to enrich the discussion.
ReplyDeleteWay to be a go-getter interviewer, E. Great story, would love to read how she interweaves voices in the memoir (good question on your part). Risk is the frontier of parenthood, isn't it?
ReplyDeleteStephanie
oh course i find this riveting. my genetic disorder is the first to be diagnosed in our family. as the scientific comprehension of it did not exist until the 1950s.
ReplyDeleteboth parents must be carriers and still there is only a 25 percent chance the DNA will align with both error sequences. there are only 10,000 of us in the entire world.
Pompes is a progressive fatal disease that is accompanied with on going skeleton muscle brake down, excruciating pain and most often death is due to respiratory failure. beautiful healthy lungs that are rendered useless when the diaphragm is finally effected with muscle brake down.
knowing this conversations with my son have always encouraged genetic counseling to see if both parents are carriers if/when there is a decision to parent. not only is there extreme loss and degradation in this body i inhabit, but for known carriers to not have bio children is to help reduce this genetic sequence altogether.
of course it will be his choice to make...
i have only planted a seed of acceptance. certainly there are many children who are in need of parents. i have just, in easy conversation, expressed the power of love and parenting to be the heart of the matter, instead of the importance of those babies being "the fruit of his loins".
I would also love to read the book as it kind of hits home. I would be facing similar decisions if I were to have another child due to my (balanced) chromosomal translocation. There is a risk that my next child would also have a chromosomal abnormality.
ReplyDeleteSounds like a great read with lots to think about. I found out that I am a carrier for cystic fibrosis when I was pregnant. My husband is not so. Our first child has severe autism and we are trying to decide whether to have more biological children or adopt.
ReplyDeleteThanks for the chance. Interesting, complex subject. As a midwife I've certainly felt humbled helping families navigate the genetic testing waters.
ReplyDeleteMy son is diabetic. Neither my husband or I knew of any diabetes in our families. Interestingly enough, people didn't want to discuss the possibility of either family being less-than-perfect, which made it difficult for us to consider possibilies. Family history can be a mine-field. Not that I consider my son less-than-perfect.
ReplyDeleteWe do have so many choices.
This sounds like a fascinating book. I remember reading somewhere that the average person carries 6 or 7 genes with the potential of causing serious health issues. I think "genetic conditions" are more a part of our shared humanity than most people realize.
ReplyDeleteI will definitely read Rough's book this summer.