book reviews, healthcare

Repost: A review of The Empty Room: Understanding Sibling Loss by Elizabeth DeVita-Raeburn…

This book review was posted March 2, 2016. I read Elizabeth DeVita-Raeburn’s book about her brother, Ted, after writing a nostalgic post about David Vetter, the so-called “boy in the plastic bubble”. It appears here as/is.

Imagine watching your only sibling spend eight years kept in a room he could never leave.  Then, after those eight years have passed and your brother is on the brink of adulthood, he dies.  That’s what author Elizabeth DeVita-Raeburn witnessed when she was growing up. 

Elizabeth’s brother, Ted DeVita, had gotten very sick when he was just nine years old.  The son of an esteemed oncologist who worked at Bethesda’s National Institutes of Health (NIH), Ted was eating dinner when his father noticed huge bruises all over Ted’s body.  Because he was a cancer doctor, Dr. DeVita knew his son was very sick.  After six year old Elizabeth had gone to bed, Dr. and Mrs. DeVita took Ted to the hospital where they discovered that he had aplastic anemia.  It was September 6, 1972.  I was just a baby– not even three months old at the time.  Although Ted DeVita had the country’s best doctors and state of the art technology at his disposal, medical researchers still had a lot to learn about aplastic anemia.

Ted wasn’t immediately put into “The Room”, the laminar airflow room where he spent the last eight years of his short life.  His parents brought him home from the hospital on September 8, 1972.  Five days later, he was back… this time, to stay.  From age nine on, no one touched Ted without gloves.  He didn’t leave the room unless he was wearing a “spacesuit” that protected him from germs.  Everything in his room had to be sterilized, including his food. 

Ted DeVita was born in October 1962, completely normal.  He lived nine years of a relatively normal life.  Then, he was relegated to a sterile hospital room that he was not allowed to leave.  He was forced to endure IVs, endless pills, blood transfusions, bad hospital food, and never being able to touch anyone.  Ted DeVita was reportedly a very bright boy who would “put people through their paces”.  He was difficult to the professionals tasked with his care, yet eventually developed into a sensitive young man.  He was loved by most of the staff, other patients, and their families.  Unfortunately, because of who his father was, sometimes he was in the middle of political disputes within the hospital.  And, of course, because his situation was so extraordinary, sometimes the press invaded his privacy, too.

When Ted died in 1980, Elizabeth was just 14 years old.  Many people expressed how difficult his passing must have been for her parents.  Few people realized how hard the loss was for Elizabeth as Ted’s sister.  In her book, 2004’s The Empty Room: Understanding Sibling Loss, DeVita-Raeburn writes about what losing Ted was like for her.  She also interviewed many other people who lost siblings when they were very young and explores what that loss meant for them as they continued living.

I first learned about this book a few weeks ago, when I decided to blog about David Vetter, the Texas boy who was about my age and had lived in a plastic bubble.  I grew up hearing about Vetter in the news.  He was a year older than I was and had been in isolation since birth because he had a disease called SCID (severe combined immunodeficiency).  For some reason, I thought of him and did some research.  That’s when I read Ted DeVita’s story and learned about his sister’s book. 

Though I have three sisters who are alive and apparently well, I was interested in reading The Empty Room.  kind of knew someone in high school who had aplastic anemia.  Unlike Ted, he died within weeks of his diagnosis, also when he was a patient at NIH.  Also, my academic background as a public health social worker makes me interested in these types of books.  And, of course, as a child of the 1970s and 80s, I had seen The Boy In The Plastic Bubble, an unauthorized made for TV movie starring Diana Hyland, Robert Reed, and John Travolta.  That movie was loosely based on Ted’s and David’s stories, though neither of the families were ever consulted about or consented to the making of the film.  Elizabeth DeVita-Raeburn’s comments about The Boy In The Plastic Bubble are also intriguing for those of us who have seen the film.

I wish DeVita-Raeburn had focused her book on her brother’s story.  On the other hand, after reading her book, I can see why she couldn’t do that.  Toward the end of the book, Elizabeth explains what it was like talking to her parents about her brother’s death.  It was extremely painful, especially for her mother.  As she interviewed her parents, Elizabeth learned the adult version of her brother’s story.  She also gained some insight into what her parents did to help her cope with Ted’s illness. 

Throughout the book, DeVita-Raeburn writes about how children who have lost a sibling learn to adjust.  Oftentimes, they are encouraged to forget about the lost sibling.  Sometimes they change aspects of themselves as if to reclaim some part of the lost brother or sister.  She writes about a sister who had been athletic before her brother’s death, but became even more so afterwards, as if she wanted to preserve that part of him.  She writes of another sister who had become a star student, almost as in tribute to her brother’s academic ability.

DeVita-Raeburn writes about the Kennedy family, which has been famously shrouded in tragedies as much as it has its dazzling politics.  Apparently, John F. Kennedy had not had political aspirations before his older brother, Joseph, died in a plane crash.  He had taken on his brother’s interest and went on to become our thirty-fifth president.  When JFK was assassinated, younger brother Bobby determined to make a run for the White House until he, too, was killed.  Youngest brother, Ted Kennedy, was also a politician.  He settled for being a senator.

I was fascinated by DeVita-Raeburn’s commentary on the Brandt twins, Raymond and Robert, who had been identical twins in a family with eleven children.  Their parents were German immigrants who were devout Lutherans. Robert and Raymond Brandt grew up in Ohio, dressed the same way, shared the same bed, and were always together.  When they were twenty years old, they took jobs working as linemen for the electric company.  Robert died in a freak accident and his brother was left to carry on.  DeVita-Raeburn met Mr. Brandt, who later started a support group for twins who had lost their twin sibling.  Her recounting of the Brandt brothers’ story is very compelling.  I wanted to find out more about the Brandt twins after reading about them in The Empty Room.

Apparently, a lot of women who have lost siblings, particularly if the sibling they lost was an only son, keep their maiden names when they marry.  I thought that was an interesting point, though nowadays, a lot of women keep their names anyway.  Personally, I was happy to take Bill’s name for many reasons, not the least of which it would mean no one would ever call me “genitalia” again.  If you know my real name, you may know why a few people called me that. 

Elizabeth DeVita-Raeburn’s book, The Empty Room, is beautifully written and well-researched.  I appreciated her personal insight and research into the phenomenon of sibling loss, especially since it was a topic that hit so close to home for her.  The only editing glitch I noticed was when she referred to her brother’s “spacesuit” as a “Nassau” suit.  I think she meant NASA.  I also liked that at the end of the book, she included a reading list for those who wanted to learn more about what it’s like to lose a sibling.

I think this book is excellent reading for anyone who has lost a sibling, especially if they were children when the death occurred.  Aside from that, it’s also a great read for people who are public health social workers by training… or really, just anyone who finds these kinds of books interesting.  I realize that some people may find this book’s subject matter depressing.  I, for one, think reading The Empty Room made me wiser.  It also made me grateful for medical researchers.  Nowadays, no one stays in laminar airflow rooms or plastic bubbles for years.  Thank God for that.

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healthcare, history, nostalgia

Repost: Remembering David Vetter, the boy in the plastic bubble…

This post originally appeared on January 31, 2016. I am reposting it as/is today because it accompanies a book review I will repost after this.

The 70s and 80s were an interesting time to grow up.  They don’t seem like they were that long ago to me, but now that I’ve reached middle age, I can say with honesty that they were.  One story that intrigued millions of people when I was growing up was the story of David Vetter. 

David Phillip Vetter was born on September 21, 1971, about the time my parents conceived me.  He was from Conroe, Texas, a suburb of Houston.  He had an older brother, David Joseph Vetter III, who died the year prior to his birth.  Both David and his brother had a genetic disease called SCID (severe combined immunodeficiency).  It meant that they were born without immune systems that could effectively fight off infections.  The slightest illness could be fatal to someone with SCID.

A program about David Vetter.

Because David had this disease at a time before there was a treatment for it, he was forced to spend all but two weeks of his life in a plastic bubble.  I distinctly remember hearing and reading about David.  I also remember the 1976 film John Travolta, Robert Reed, and Diana Hyland famously starred in called The Boy in The Plastic Bubble.  I saw the movie many times when I was growing up.  It was based on the real life story of Ted DeVita, a teenager who had severe aplastic anemia.  Ted DeVita lived in a sterile hospital room for over eight years.  DeVita’s and Vetter’s experiences were fascinating to people all over the world.  DeVita died in 1980 of iron overload, caused by too many blood transfusions.

A preview of John Travolta’s movie loosely based on Ted DeVita’s case. At this writing, you can see the whole thing on YouTube.

I’m reminded of David’s story this morning.  There was a link to a New York Times retro report on my Facebook feed.  Though I hadn’t thought about David Vetter in a very long time, I quickly found myself recalling him as I watched the 12 minute video and read the accompanying article.   

Had he lived, David would be my age.  He had a bone marrow transplant that initially worked.  Unfortunately, the marrow had a dormant strain of the Epstein Barr virus in it.  The virus activated, and David ended up with a virulent cancer that overwhelmed his body.  He died on February 22, 1984.

On David’s grave, the epitaph reads “He never touched the world… but the world was touched by him.”  Even now, knowing that children with SCID are no longer kept in plastic bubbles, I can’t help but wonder what life would have been like for David, had he managed to become an adult.  Though he was able to accomplish a lot in his twelve years and provided science and medicine with new knowledge about a rare disease, there were so many things he couldn’t do.

A New York Times video about David Vetter.

NASA made David a space suit, which he wore a handful of times.  The suit allowed him to emerge from the bubble, though he remained tethered to it by an eight foot long cloth tube.  He never felt his mother’s kiss until he emerged from the bubble for the bone marrow transplant.  He never would have been able to have sex.  I even wonder if he ever saw a dentist… though, I guess if you live in a sterile environment, bacteria is not an issue.  Doctors worried what life would be like for David if he made it to teenhood or even adulthood.  Would he be able to tolerate life in the plastic bubble for an entire normal lifespan?

I am amazed by what David Vetter’s twelve years on Earth did for the advancement of science, ethics, and medicine.  I am also amazed at how old I am now.  It seems like yesterday, I was just a youngster.  I look at those photos and videos of David Vetter in his germ free environment, knowing that was state of the art medicine for the 1970s and 80s.  What happened to him then, would never work today. Nowadays, kids who are identified with SCID before they get sick are given bone marrow transplants.  In fact, in the video posted with the New York Times story, there is even a story about a woman whose son had SCID identified in utero.  He had a bone marrow transplant before he was even born.

When I was in high school, one of the most popular guys in the senior class developed aplastic anemia.  He ended up going to the National Institutes of Health in Bethesda, Maryland, where he died just weeks later.  The day Mike Haury died, was coincidentally also the day 55,000 Armenians died in a massive earthquake… December 7, 1988.  I have read that aplastic anemia is now much more successfully treated than it was in the 80s.  Again, it just doesn’t seem like it was that long ago.  I guess it was.

Edited to add: Although I know that COVID-19 life is nothing like it must have been for David Vetter, in a weird way, the constant focus on contagion and masking kind of reminds me of him. I’m looking forward to having the next vaccine.