Please join us in honoring Nurse Rose-Marie Wallenberg whose 20 years of urological expertise has empowered countless children diagnosed with Bladder Exstrophy (BE). Through her extensive research and focus on patient care, she serves as an invaluable resource and tremendous source of comfort to parents of children with BE.
Nurse Rose-Marie’s scope of care moves beyond the medical clinic and research lab. Over the years, she has told parents of patients to call her anytime day or night with any questions, often giving out her personal phone number. Nurse Rose-Marie has been instrumental in creating a close community for children with BE and their parents. Her contribution to the BE kids and families is nationally known in Sweden and beyond.
Nurse Rose-Marie has had a long standing relationship with James and Pernilla Burke, who have generously supported bladder exstrophy research at the Brady Urological Institute.
The Story of Nurse Rose-Marie WallenbergBy Pernilla Burke, mother of Alice Burke (classic BE)
This story is a letter that serves as a tribute to Rose-Marie Wallenberg, a nurse and dear family friend who has been an invaluable resource and tremendous source of comfort to me personally as a mother raising a child born with Bladder Exstrophy and to my daughter and our family but also to the BE community worldwide. It wasn't until I started collecting notes on her achievements that I realized what an immense impact her curiosity, passion and dedication has had especially on the Swedish BE community.
When Alice was born, my husband and I were in a state of chock. While I was till lying on the bed in the delivery room and they had just taken Alice to the NICU, I called my mother who lives in Stockholm Sweden. Between all the tears I was able to explain to her what had happened and what was going on with Alice. My mother responded calmly: this is nothing to worry about she will be fine. In that entire day, those words from my mother are the only words that I remember clearly and were the only words that soothed me.
It turns out that my mother, had already met a 6 year old girl with BE through one of her closest friends Rose-Marie, who also happens to be a nurse. I had known Rose-Marie ever since I was a little girls growing up in Sweden and didn't know that Rose-Marie had spent a large portion of her career caring for and studying children with BE. Only a few days later I was able to speak to Rose-Marie and she told me so many things about Alice and what things were going to be like. One of the most important things she told was the Alice was going to be one of the most charming people I'd ever known, and she was indeed correct because at 5 years old Alice is the most fun-loving happy joyous person I've ever met.
Rose-Marie assured me that Alice would be fine and that she could handle all the things that lay ahead without a problem. "It's not a problem" she said many times, "she can handle it!" In the first few years of Alice life we became very close; when Alice had a fever I called Rose-Marie in Sweden and it was she who instructed me how to collect a urine sample and I would just drive over to the pediatrician office here in Princeton where we live and hand them a test. Our pediactrians office who has been around since the 1950's had never treated a child with Bladder Exstrophy. It was Rose-Marie through me that taught them how to handle things. It was Rose-Marie that told us what to say to class parents and teachers, and what language to use when speaking to other kids about Alice. And the list goes on and on, basically through Rose-Marie we were given a handbook of what to do in all matters regarding Alice. For the past 5 years, we have seen her in Sweden each summer and both my daughters have become very close to her. To me, our friendship and connection was not just some random coincidence it was a result of powers much larger that anything we could ever imagine.
Nurse Rose – Marie
Why this work has been so important to Rose-Marie is because she understood many years ago that medical staff knows a great deal about the medical aspect of the BE patients but knew less of the psychosocial part and she realized we could only learn that part from the patient and family themselves.
She understood the importance of BE kids and parents meeting other BE kids and Parents. Parents had to be able to ask questions and learn that they were not alone. Caregivers and doctors could and can only do so much and the best way for parents and patients to learn and feel hopeful is to learn from other parents and patients who have been where they are. She learned that " it was so important for the children to meet each other." And for parents to have questions answered such as: Will my son/daughter be able to walk? Will he be able to pee and poop and will he be able to have a family? How will they do later in life? How will they feel? Not just short term but also long term. When Rose–Marie cared for her first BE child, his name is Linus, at the Sahlgrenska Hospital in Gothenburg Sweden in 1994 none of those questions could be answered. None of the parents have ever heard of BE. "There was a loneliness around all the BE parents, they'd never heard of BE before," she says.
In 1994, she returned to Sweden after working one year in Saudi Arabia, and had never seen a BE child before when she had her first BE patient in 1994. She was stunned by how large of an operation he had already gone through as a newborn baby. With the little bandaged legs hung up in a sling without the ability to move and without the ability to fall asleep in the arms of his mother, she couldn't stop wondering "what will happen later on?" "how will this baby do later in life?" "will he have to wear diapers until he is 14-15 years old?" "How will his interaction be with his friends at school?" The hospitals BE specialist surgeon, Dr Ulla Sillen, saw Rose- Marie standing at the edge of baby Linus hospital bed and wondered what Rose-Marie was thinking about. Rose-Marie posed all her questions to the doctor who said that these questions was what gave her a heavy conscience as well; that she as a doctor was not able to answer those questions. Dr Sillen knew that Rose-Marie had an infinity for research because she had already worked as a research assistant at the psychiatry clinic at Karolinska Hospital(world renowned) in Stockholm, and suggested to Rose-Marie to do a study in regards to those questions.
Rose-Marie started the study "Mothers experiences of living with children born with BE" right away. Rose-Marie had already noted that the fathers of BE babies seemed to be more despondent and more emotionally disconnected than fathers of babies who were born with other birth defects. She assumed it might be because the newborn BE kids couldn't be picked up into the arms of the fathers for many weeks and it restricted the bonding of the fathers and newborn babies. The mothers would be hanging (this was in 1994) over the bed trying to breast feed and thus experienced the closeness needed for mother and child. After this discovery the Swedish surgeons decided to leave the newborn BE infant at home with their family for the first 6 weeks of their life. When this change came the fathers bonded much better with the infants. Another important factor in this decision was also that it was considered the baby bones were too fragile to operate so early. It was clear that the family's ability to cope was greatly increased if they were able to first bond with the baby. And also the baby, understandably, would be stronger and its ability to thrive in a hospital setting was improved having spent that time with its family before major surgery and lengthy hospitalization. Rose–Marie says this was a very important decision in many aspects. The findings from "Mothers experiences of living with children born with BE" were presented at the ESPU (European Society for Pediatric Urology) conference in 2004.
In this study, "Mothers experiences of living with children born with BE", one of the questions Rose–Marie posed to the mothers was "what causes you the most worry and anxiety about when it comes to your child and their future?" Of greatest concern was "what happens when my child starts school and is still wearing diapers?" In answer to this question Rose-Marie begun another study, a few years later, named "adolescents psychosocial experiences living with Bladder Exstrophy" to find out about the young adults experiences of using diapers. In Sweden at this time, BE patients wore diapers until the age of 14-15 and then a stoma was implanted. All 10 young adults in her study (age range 15-25) gave the same answer: "no child should wear a diaper when they start school and that a stoma should be done before beginning school at about 6-7 years old, and all of the young adults in the group felt that BE children would be capable to handle a stoma already at 6-7 years old." In this study she had interviewed a young teenage man who because he wore diapers he had no friends in school. After school every day he would hide in the forest so that his parents wouldn't discover he didn't have any friends and so that they would believe that he was out playing. He had hidden from his parents how he felt about wearing the diapers because he didn't want them to worry.
Because of Rose-Maries study the guidelines were changed so that stomas be done before the beginning of school, which in Sweden is age 6-7 years old. When she presented her findings to the doctors they were surprised but accepted her findings and it was then introduced in all 4 BE Clinics in Sweden that all children with BE had the stoma put in at 6-7 years age.
In this study she not only found answers about at what age to do the stoma and end the use of diapers earlier but she also found that the young adults had all suffered greatly emotionally from was not having a belly button and from having ugly scars. No one had ever even thought of the fact that a belly button would be that important. In Sweden, they would wait until the age of 21 to make belly buttons. The doctors and surgeons listened again and they were all referred to the plastic/reconstructive surgery department at the Sahlgrenska hospital in Gothenberg right away to get belly buttons done and to reduce scarring. After this surgeons started being more careful to reduce scarring during surgery as much as possible.
From the studies Rose-Marie came to realize that the care givers and doctors must ask more about what the patients want even in the surgical questions and not ever take for granted that the medical personnel knew what would be best for the children. She says "I learned to listen to the patients wishes." Rose-Marie's study "adolescents psychosocial experiences living with Bladder Exstrophy" findings were presented in 2006 at the ESPU. She received first prize in the Nurse section of the ESPU conference and the audience gave her a standing ovation.
In 2002, she was working in the surgical department at a children's hospital in Gothenburg, Sweden as a specialized nurse when she became responsible for a family with a newborn baby boy with bladder exstrophy. Understandably, the family was worried and inconsolable. The family was informed by doctors, nurses, psychologists and therapists on what would transpire in the near future as far as operations etc. The mother calmed somewhat by the information but the father remained inconsolable about the boys future not only in the short term but also in the long term. What would his sons future look like, how would this severe birth defect affect his future, not only in regards to all the operations but also in a social sense, would he be able to run and play and have friends like other boys? Would he be able to have a family of this own? Nothing would calm him down, they tried everything to encourage him to think about only what to do next and to be in the present and to try to take one step at a time. He became almost unreachable in matters affecting the son.
Rose–Marie decided after speaking with the parents to invite 3 families with boys whom had bladder exstrophy to come to the hospital and meet the newborn baby boy – William – and his parents. The families who were coming to visit knew about the father's anxiety and fear. The 3 boys, Marcus 5, Gabriel 7 and Linus 10 had a lot of empathy for the father and wanted to help. The gathered in an empty patient room. The boys looked at and patted the newborn baby and told the baby he was beautiful and amazing. Marcus, the 5 year old, went over to the father and put his hand on his arm and said "You shouldn't be worried, William will be just as wonderful as we are" and swept up his arm. Rose-Marie said to the boys that Williams father had a hard time believing that William would be able to walk, run or jump in the future. Then Linus, the 10 year old asked: "can we jump on the beds to show what we can do?" And then all 3 boys started jumping, hopping and dancing up and down onto the beds. The room all of a sudden turned into a full circus. The father burst into tears while laughing at the same time. Rose–Marie comments "what the doctors and other hospital care givers had attempted to achieve in the last 2 weeks with medical information was reached by these 3 boys in less than an hour. " A highlight for Rose-Marie was to understand how much families in the same situation can give to each other emotionally even giving them enough strength to live their lives to the fullest regardless of their child's severe birth defect.
Currently in Sweden the foremost BE surgeon, Gundela Holmdal travels to wherever the child with BE needs surgery. But plans are in place to create one center, similar to JHH, where all BE children would be treated together. In Sweden, about 2 children per year are born with BE.
In many countries BE is still not a condition they know how to treat, and in the 90's she would see children come from for example, the Ukraine several years of age with their bladders still on the outside of their bellies. The advice she gives to parents of BE children to look upon your child as beautiful as he or she is. Nothing is wrong everything is perfect and beautiful just as it is. Let the surgeons take care of all that they need and focus on everything else and be joyous in your child's perfection and beauty. Trust that your surgeon knows what they are doing and take on day at a time and enjoy your child. Know that your child's will be filled with joy, happiness, friends, husband or wife and will become parents one day themselves. There are no limits whatsoever as far as sports or anything they should wish to do in life. Make sure to meet other families with BE children as soon as you have the strength. Communicate your utmost desire to meet other children of all different ages. Other families can become an invaluable support, with advice and ideas and will listen to you. Always voice your thoughts, your questions and demand answers. Ask about everything. Some things are not always considered by doctors or nurses! Think about the belly button, scarring and the right age for the continence procedure and speak with the psychologist. When getting close to puberty it's very important that BE teenagers speak with other BE teenagers and young adults about sexual matters, and becoming pregnant or becoming a father. It's also important to discuss the sexual aspects with the parents early on. BE children will be able to have children! She says, don't forget to put just much time and attention into the siblings. Always listen to the thoughts or advice the sibling might have, questions about the defect, what could be said to friends at school etc. Siblings can sometimes regress and want to be a baby again, let them and it will pass sooner. Let the siblings be included as much as possible in medical and hospital visits. If they are not included they might imagine things that are scary and not real. Above all, enjoy your BE child/baby, they will do fine regardless of all the surgery, exams, x-rays, pain, and other very uncomfortable situations. They have the most charismatic personalities whom meet the world with curiosity, thirst for knowledge and a ton of charm.
Her contribution to the BE kids and families is nationally know in Sweden, and she has felt an enormous gratitude and appreciation from parents. Over the years, she has told them to call anytime day or night with any questions and she would give out her personal phone number to all the parents. And she said "no one ever called if it wasn't something very important."
Needless to say, Rose- Marie accomplished a lot that affected and improved the lives of many BE children. She comments that it wouldn't have been possible without the support of Dr Ulla Sillen. She says Dr Sillen was always very curious to hear different perspectives and was always very encouraging to all other BE experts in the field. For example, Dr Philip Ramsey world-renowned surgeon from the UK, was often asked to come to Sweden for 2nd opinions and to share any new discoveries. She adds, Dr. Ramsey was also very concerned about the well being of the entire family. Another world-renowed surgeon who would did a lot for both the young adults and for the parents is Dr. Woodhouse.
In Sweden, similarly to that of here in the US, every year there is a gathering of ILCO. Which is the association the Swedish Ostomy Association. Every year, all the BE kids get to meet eachother and are put into groups based on their age range. As a certain age the ILCO kids get to go to camp on their own without their parents. This meeting once per year and how it's set up has been inspired somewhat by Dr Gearhart and our BE picnics.Rose-Marie worked as a nurse in urology/defects specializing in Bladder Exstrophy from 1994 until she was diagnosed with cancer in 2008. Even though she is no longer actively working as a nurse she stays closely connected to the BE community in Sweden, especially all the children she has cared for during her years at Sahlgrenska Hospital in Gothenburg. One of the children that's she been very close to, and who she calls her idol – Emanuel - is now 13 years, is a talented performer who sings, dances and plays the guitar. He has said that he will perform at Rose-Marie' funeral, and his father who is a priest will perform the ceremony.