There is Help for Children with Chronic Disease
Dr. Eitan Kerem, is a world-renowned cystic fibrosis specialist and head of the Hadassah Medical Organization's Division of Pediatrics and founder of its Center for Children with Chronic Diseases. He is the principal investigator of many national and international multi-center clinical trials and author of over 170 papers in the field of pulmonology. Born in Jerusalem, he graduated from the Hebrew University-Hadassah Medical School in 1982. He completed his pediatric residency at the" Bikur Holim" Hospital in Jerusalem and in 1987 he joined the Chest Division of the Hospital for Sick Children in Toronto, Canada, for a three-year fellowship in pediatric respiratory diseases. In 2002 he was appointed Head of the Department of Pediatrics at the Hadassah Medical Organization.
Melanie Cole (Host): Advances in the field of medicine and technology have led to an increase in the survival rate and life expectancy of children with chronic diseases and special needs. Today, we are speaking with Dr. Eitan Kerem on this episode of Hadassah On Call.
Welcome to the show Dr. Kerem. What kinds of chronic diseases do children suffer from that you treat at the Center for Children with Chronic Diseases at Hadassah Medical Organization?
Dr. Eitan Kerem, MD (Guest): Hi, hello. Chronic diseases in children are common in about 10% of the children in different degrees of severity. Some of the diseases are life shortening, some of the diseases are reducing quality of life and some diseases children can cope with but they still know that they carry a chronic disease.
Melanie: Dr. Kerem, tell us how you came up with the idea for the pediatric chronic disease center and what is it like for families?
Dr. Kerem: So, the idea to have such a center came from a family of a very sweet small child who had many, many medical problems and they asked me to be their doctor. And I told them, look you are all very nice but your child has many diseases, none of them in my area of specialty and they said oh no, no, you don't understand exactly what we meant because we feel that we are lost in the medical system and they pull out a very thick file with lots of letters of different doctors and they say we – on Sunday we go to the cardiologist, on Monday to orthopedic surgeon and Tuesday to ophthalmologist; each one of them sees us, writes a note but none of them speak with each other and our doctor does not have the time and expertise to give us the coordination on the different diseases that we have.
And we thought that instead of having a disease oriented center, we are going to have a patient oriented center which means we put the patient in the center and all the doctors will come to see this patient on one day and then at the end of the day, we will sit together and discuss the different aspects of the diseases of the child. And the child will have a medical home where we know the child and when the child has even trivial problems with fever or vomiting; we know what different drugs the child is taking, and we know to consult the child. However, when we say, it's a medical home; we mean that it is not only a place for the child, but it is also a home for the whole family where we relate to the whole different aspects of raising a child with chronic disease. Not only the emotional challenges that the children have when they grow, but also the emotional challenges and marriage challenges the parents have and not only that but also the healthy siblings. They have also emotional stress that not always they have the place and the atmosphere where they can express it.
Melanie: What an absolutely amazing way to approach this. Tell us about some of the other subspecialties when you say there are so many different doctors involved and that you all get together and speak about a particular patient. Tell us what some of those other subspecialties are.
Dr. Kerem: Well, the center is a cluster of different what we call disease oriented centers. So, we have center for children with chronic lung diseases. We have center for children with neurological developmental problems. We have center for children with eating and swallowing problems. We have a national center for children and adults with Down syndrome. We have a center for endocrinology, juvenile diabetes, rheumatic diseases. All sorts of different diseases that children grow with and need a comprehensive approach that will see not only the disease but also the child. But what is even makes it more efficient we can use the support team for the different diseases because for a social worker; a child with chronic lung disease or juvenile diabetes or rheumatology problem; it's the same challenges and we can use the same social working team for this – in the center for different diseases which will make it more efficient on one end but even more professional and more expert in the whole aspect of raising – for a family raising a child with chronic disease.
Melanie: Dr. Kerem, along those lines, and you mentioned that marital problems with couples that have children with chronic disease and the siblings; everybody kind of goes through that together. So, how does the Center for Support of Social and Psychological Challenges, how do they help the families? What do they do?
Dr. Kerem: What are the challenges of the young couple that had a dream of their healthy child that they will grow together and now they are facing a completely different situation? And as one father told me, it's like you take your family for a holiday in the Caribbean and then the pilot tells you we are apologizing, but the world changed, and we are going to land now in a desert in Bangladesh and there is no way to get out of it. So, we now need to adjust ourselves to a new way of life, forget about the vacation, forget about the bathing suit and now we need to change, adapt our life to this different way. And many times, what happens is that the mother gives up her career ideas or dreams and devotes her time to taking care of this child. And on the other hand, the more financial challenges for the family, the father takes more time in work in order to compensate for the loss of income from the mother's side. And at the end of the day, the father comes tired, wants to sit, have a drink, and fall asleep in front of TV. The mother would like to have someone to share her day and thoughts and feelings and they start to get separate from each other without noticing. And they start feeling angry to each other. The father says you don't see how difficult is my day and I work, I work so hard, I need now some silence and the mother says you don't see how I'm dealing with the difficulty of raising the child and taking care of the house and I need someone to talk with. And one day something happens, and they start to fight and the rate of divorce in families where the child has a chronic disease is almost double the rate of divorce in the regular population.
And we tell the parents this story when we first meet them. And we tell them, look if you don't take care on your relationship, if you do not nourish it; this will be the end and if you don't want it to be the end you need to start working on it together now. And we have parents group and we refer them to individual therapy or consultation in order to help them coping with this stressful situation.
Melanie: So, if someone wants to make an appointment and their child has a – something suspicious and they haven't really seen many doctors, they don't know what's going on; tell us a little bit about your medical inquiry unit and how does a new family come into the center?
Dr. Kerem: They make an appointment and then we have the one doctor that does the intake and writes down the list of problems that they have and then we invite them to another meeting where all the subspecialties will see them and order the tests and then we try to make all the tests on one day. In parallel, we have the support team, the social worker, the psychologist, the nutritionist, the physical therapist, whoever also needs to be involved in this- with this family and we start building the relationship on one hand and on the other hand, we activate all the medical expertise that we have in order to get them a final diagnosis and a plan of treatment.
Melanie: And tell us about your team that works there and helps with all of these outside aspects of bringing families into the pediatric center.
Dr. Kerem: The team needs to be composed of very special people with very special personalities. They have the empathy of being part of growing a child and a family with chronic disease. I can tell you that for many families, we are the closest people for them and if they have a sinchar or something good happen in the family or on the other hand, somebody dies; many times, we are the first that they call in to share the news or to share their feelings about what happened in their family. We build relationships many times which is very intimate. They share with us things that happen at home and for the children; we are also part of the family because they know us many times more than they know the teachers in school, that every year may change.
Melanie: And so wrap it up for us with some of your goals for the Pediatric Chronic Disease Center at Hadassah Medical Center and the philosophy, what you want families and listeners to know about this amazing center that you have helped to create.
Dr. Kerem: I think the major message is that the patient is in the center. The patient is a human being which is a challenge for our society because young families with little resources, with dreams that they need to give up are the weakest part in our society. And if we want to make our society strong; we need to make the weak part stronger. And as they get stronger, we will become stronger. And what I am amazed at is the number of people that come and volunteer and want to give and giving is something that whatever you gave, always will stay with you.
Melanie: Thank you so much Dr. Kerem, for being with us today and for all the wonderful work that you are doing on behalf of these children and their families. This is Hadassah On Call New Frontiers in Medicine brought to you by Hadassah, the Women Zionist Organization of America. The largest Jewish women's organization in America, Hadassah enhances the health of people worldwide through medical education, care and research innovations at the Hadassah Medical Organization. For more information on the Center for Children with Chronic Diseases, please visit Hadassah.org., that's Hadassah.org and to hear more of these podcasts, please visit Hadassah.org/podcasts, that's Hadassah.org/podcasts. I'm Melanie Cole. Thanks so much for listening.
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