A Story about Beth, Eric, and '65 Roses'

The story and pictures of one family’s experiences before, during, and after a lung transplant.

Note: In this story, the author talks about her family’s contact with the donor family, which in this case included a face-to-face meeting. The amount of contact that a family has with their donor family varies according to the two families’ wishes and the recipient’s transplant program. The communication process is assisted by members of the transplant team and the organ bank. For more information about contact with donor families, please talk to your transplant team.

A New Baby
Cystic Fibrosis, or "65 roses"
Going on the Lung Transplant List
Intertwined Forever
The Sequence of Events
After the Transplant

A New Baby

There once was a couple, Evelyn and Wolfgang Bauer, who wanted very badly to be parents. After soaring around the world- because world travel had been a keen interest for both all their lives- they moved to the States in 1976, settling in the small town of Gordon, Nebraska. A town with tree-lined streets and friendly people in the heartland of the Nebraska Sandhills seemed just the place to raise children.

Realizing they were unable to have their own children, they applied for adoption. After 8 years of waiting for a child, one March day in 1979, while Evelyn was at a World Day of Prayer service, Wolfgang got a phone call at his office. It was about the adoption they had been hoping for: a baby girl, 8 lbs., and 19 days old. News spread quickly in the friendly town, and neighbors starting bringing all the items this new baby girl would need. It was as if the entire town was adopting this baby girl!

As the couple drove up to the Nebraska Children’s Home in Omaha on that freezing March day, they had everything a newborn baby was going to need, all in their station wagon. There was just enough room left to put the tiny baby! As they sat in the living room of the Children’s home, anxiously waiting for the baby to be brought through the beautiful French doors, they could only imagine how their lives would change. The name they had chosen was “Beth Anne.”

Top of Page

Cystic Fibrosis, or “65 Roses”

Beth grew older. She always enjoyed having lots of friends over to play. However, Evelyn noticed that Beth had a constant little cough and often cleared her throat- something her friends didn’t do. Also, when she kissed Beth, Beth’s skin tasted salty. Neither of these things seemed alarming, but the decision was made to take Beth to a specialist to check on what was thought to be allergies. The diagnosis was a shock: cystic fibrosis. Or, because a little boy once had a hard time pronouncing it, the name was known as “65 roses,” which is easier for small children to say. Looking at Beth in her little blue gingham pinafore, the doctor said she might live to be only 10 years old.

Beth’s smile and the spirit that went with it were an inspiration. She starting taking all of the pills necessary, and would get excited about having a new color pill, saying things like, “Oh look, my new pills are a pretty pink color!” Daily pulmonary treatments were necessary, but like most CF parents, Evelyn and Wolfgang wanted Beth to have a normal life, and did not treat her like she was sick. She did all the things other girls her age did.

As Beth says, “My parents put me on a pair of skis and told me to ski down a hill between my dad’s legs when I was three.” Later, Beth’s doctor would introduce her as his “black trail skier” (the most difficult trail). She was fearless and always took risks with that special smile on her face.

A few years later, the family decided to meet one of Beth’s desires: to have a sibling. A boy of seven was adopted when Beth was five; his name was Wayne. Like most siblings, they had their “moments;” some of the attention was taken away from Wayne to take care of Beth.

Like most siblings, Wayne had difficulty coping with the ways in which his parents had to care for Beth at times. He saw it as time taken away from him, and there was lots of sibling rivalry. Recently, though, Beth wanted to give Wayne, who is now in the Army, a special gift. It included a picture; she chose one that was taken the first night he was a new part of the family. Now Wayne and Beth get along very well.

Beth coped by having lots of friends and spending quality time with them and with family members. This often involved lots of travel, since Evelyn’s family was in Atlanta, and Wolfgang’s family in Germany. The family traveled extensively, with all of her medical equipment.

Beth’s hospitalizations were becoming more frequent. The school placed her in a special class and wonderful teachers helped her cope, even allowing her to order pizza from Domino’s and have it delivered to class! Her weight loss had become an issue; CF kids need to eat six meals a day. The CF Foundation has a great guide for teachers, so it was helpful for them to understand that food was a necessary part of her daily treatment plan.

She had to be in the hospital for a lung cleanout (usually 14 days or longer) just 10 days before her junior prom. In Beth’s very determined way, which all her doctors became familiar with, she informed the doctor that should would only stay 9 days and take the rest of the treatment with home nurses, because she intended to go to the prom! She had been going to a tanning booth after getting the doctors to make sure her meds were okay for the booth. She also asked her boyfriend of four years to give her a bouquet of flowers to carry rather than a corsage. The idea was to cover up the arm where she had the IV’s.

Beth graduated with her class- the class of ’97. For various reasons, two of her graduating classmates were living with Beth at her home at the time. Evelyn always encouraged the kids to be at her home, so she could casually make sure that Beth had adequate food, and of course her meds. On the highways and byways as teens go, it felt better to at least have them “in house”.

Top of Page

Going on the Lung Transplant List

After a trip to Germany with her dad in ‘99, Beth came back very ill with a type of pneumonia that was very difficult to identify or treat. While she did recover, she was left with significant lung damage, which was not repairable. At that time, her doctor discussed with Beth the need for her to go on a lung transplant list. Her only hope was to receive a double lung transplant from a cadaver. There is a long waiting list— donor organs are very scarce— so if this was Beth’s choice, she needed to get on the list as soon as possible. It was a deciding moment in Beth’s life. After attending the first meeting with the transplant team, Beth looked at Evelyn and said, “This is my decision, and you’ll have to accept it.” Beth had lost 3 friends with CF who had double lung transplants, so she wasn’t initially very positive. She agreed, however, to be tested to see if she was even a candidate medically for transplantation. After 7 months of testing to see if she was a transplant candidate, the answer was affirmative.

Beth decided to go on the transplant list. The wait usually takes at least two or three years, and she knew that at any time she could change her mind and remove her name. She also knew she had the right to refuse a transplant if she was called, and it would not endanger her place on the list. Beth refused twice; she just wasn’t ready. She and her mom started going to lung transplant information meetings. The first time she saw a large table of people with masks on who were post-transplant, she was convinced that survival of such a procedure was possible. These people were laughing, joking and talking about trips to Europe. Beth wanted to continue to see the world, and she had a long list of places she still wanted to see. This was another deciding moment.

Top of Page

Intertwined Forever

Meanwhile, Eric Robinson and his wife Kristin lived in Maine, where they were mountain climbers and hikers. Eric worked in Ellsworth, Maine (a place Beth often went with her boyfriend), and Kristen and Eric loved the outdoors. They were living the Maine life (“the way life ought to be”), and enjoying spending time with their parents, who treasured them and the family time they enjoyed. Both families were close and stayed in frequent contact about the lives of Kristen and Eric.

On December 6, 2002, the lives of Eric Robinson and Beth Bauer were to become intertwined forever. That day, Eric had a very bad headache and asked Kristen to get him some aspirin. Before she got back, Eric had suffered massive brain bleeding and was rushed to the hospital. The family was told he was “brain dead” and on life support. They asked if the family had considered organ donation, and without hesitation, the answer was yes; this is what Eric would have wanted.

In the meantime, Beth had been at Children’s Hospital Boston for a week for a lung cleanout. She had been told that afternoon that she had become #3 on the regional list. (She had been #1 at Children’s for a while.)

Top of Page

The Sequence of Events

7:00 p.m.: The transplant surgeon came to Beth’s room and said, “You may get lungs tonight— you’ve become #1 on the regional list!” He said he was going to take a nap to prepare for the long operation and that the nurses would keep Beth informed.

7:30 p.m.: Beth called her dad and was initially unable to reach him on his cell. She called her mom, who was at a meeting surrounded by her friends, and said, “Mom, I may get lungs tonight!” Evelyn said, “I’ll leave right now and come to the hospital,” which was about an hour away. Beth said that not everything was definite, and she wanted to spend time with her boyfriend, who was with her at the hospital. She said she would call back when she knew something definite.

10:00 p.m.: It was a go! Beth had by now reached her dad, who was at the hospital. She called her mom and said, “Come on down, but drive carefully.” Her mom’s friend had told her to let him know if she needed a ride to the hospital. Evelyn thought of calling, but it was late. She was amazed at her calmness and got everything together quickly to plan to be away from home indefinitely.

11:00 p.m.: Evelyn arrived at hospital and was so pleased to see that Beth’s CF doctor was there in her hospital room with her. She had gotten out of bed and come to the hospital, she said, to be with Beth and her family until Beth went to surgery. Beth’s best friend Denise was also there, along with her fiancé Norman and her father. Phone calls were made to family members and appointments were cancelled to prepare for the surgery.

12:00 a.m.: The jet from Children’s hospital left for Maine to pick up the organs Eric’s family had donated. Beth was to receive Eric’s beautiful healthy lungs. It was truly a miracle.

2:00 a.m.: The nurses told Beth it was time to go down to pre-op. They got a wheelchair, but Beth preferred to walk. When it was almost time to enter the pre-op, Beth burst into tears. Evelyn took her in her arms and said, “Everything is going to be okay.” Her friend, who had always told Beth she would be there when she got the transplant, started holding Beth’s hand as all of the preliminary procedures began.

3:00 a.m.: Beth’s surgeon came out with a big smile, and said, “Beth, you are getting beautiful lungs.”

4:00 a.m.: Beth, after kissing everyone, went into the operation room. She later said rock music was playing. Her surgeon told her, “Everything is going to be all right,” in his quiet, reassuring tone. Beth made one request: “Tell Norman I love him.” One of the nurses held Beth’s hand, and at that time she knew that everything was going to be okay.

14 hours later, the operation was over and Beth was taken to intensive care.

Top of Page

After the Transplant

Beth was in the hospital only a little over two weeks and stopped by a friend’s house on the way home. She wanted to make sure she had something for everyone for Christmas, and said her first visit would be to the mall! Her Aunt Louise had flown up from Atlanta, and everyone concentrated on getting some type of Christmas together. As Beth said, this was her greatest Christmas ever. She had forgotten that she had not been able to sing for a long time, so she sang and sang with her new lungs.

While some problems accompany all transplant patients, Beth continues to do well. She’s been checking places off of that list she made of countries to visit.

Recently, another wish came true. She had become close to Eric’s family, especially to his mother, Eileen. Eileen invited Beth to come spend the night in Maine. After many phone calls, e-mails etc. over the last 19 months, she finally met Eileen and Roby Robinson and Kristen, Eric’s wife. Beth later wrote, “The Robinsons are the true heroes in this story, especially Eric.”

Beth has continued to do things she felt she never could have done unless she had received a lung transplant. Some of these include white water rafting and traveling to many different countries. As part of the second anniversary of her transplant (12/7/2004), she has just returned from Beijing, China. Also, the Bauer family remains in frequent contact with the Robinsons. The intertwined relationship between their son Eric and Beth continues to provide a healing experience for both families.

Top of Page