Welcome to Holland: The Stuff I don’t See as a Prenatal Genetic Counselor
For months I have been meaning to write about the book Mi Dor Li Dor, Genetics and Genetic Diseases: Jewish Legal and Ethical Perspectives, by Dr. Deena Zimmerman (an Israeli pediatrician and yoetzet halacha). The book is divided into 3 sections: information about advances in genetics and ethical issues that may arise, facts about common genetic diseases, and the final section is called “Living with Genetic Diseases.” The book is very user-friendly and is a great resource for beginners in genetics, but what interested me most was that last section. While I see the other stuff in my professional life all the time, what Dr. Zimmerman tackles in the last section is the stuff they don’t teach you in school.
Dr. Zimmerman talks about the challenges of raising a child with special needs. As a prenatal genetic counselor, I often talk to my patients about “what to expect” when a prenatal diagnosis is given-whether it’s a diagnosis of Down syndrome, sickle cell disease, or a congenital heart defect. We talk a lot, I give the parents referrals to doctors and support organizations, and then I say goodbye. I tell them I will be there for them if they ever want to talk, but they never do. But I think about them every now and then, and I wonder how they are doing.
I think that only a parent and family of special needs children can understand what it means. Dr. Zimmerman quotes an essay that is probably the best metaphor I could find about what it’s like when one comes to the realization that while you cannot plan how your child will be, you must appreciate your kids the way they are. The essay is written by Emily Perl Kingsley and its called “Welcome to Holland (see below).”
Ultimately, I have learned through work and through personal experiences that the best support one could get is from those who can say “I’ve been there too.” People in similar situations ‘get it’ and they are probably the best people to vent to and to get advice from. While of course family and friends are critical support, I urge anyone going through a hard time to seek out those have experienced similar things via support groups and word of mouth. It can make all the difference.
As an aside, I just heard about a new UJA project called “The New Normal,” which is a blog about disability that is housed on Facebook. Personally, I am thrilled with the title of the page because it shows recognition that even if someone has a disability, they are still normal. But that’s a whole other blog post…
Posted on May 14, 2013, in Uncategorized and tagged Deena Zimmerman, disabilities, genetic counseling, Program for Jewish Genetic Health, UJA, yoetzet halacha. Bookmark the permalink. Leave a comment.