The following case study is of Luba, a 4 year old girl diagnosed with Tay-Sachs disease and her music therapy process. Foundational information on Tay-Sachs disease is provided alongside a discussion of anticipatory grieving, and the death of a child

Clements-Cortés, Amy

English

Scholars Commons

Wilfrid Laurier University 
Scholars Commons @ Laurier 
Music Faculty Publications Faculty of Music 
2013 
Luba’s Theme 
Amy Clements-Cortés 
Wilfrid Laurier University, notesbyamy2@yahoo.ca 
Follow this and additional works at: https://scholars.wlu.ca/musi_faculty 
 Part of the Marriage and Family Therapy and Counseling Commons, and the Music Therapy Commons 
Recommended Citation 
Clements-Cortés, A. (2013). Luba’s theme. Imagine, 40(1), 70-73. 
This Article is brought to you for free and open access by the Faculty of Music at Scholars Commons @ Laurier. It 
has been accepted for inclusion in Music Faculty Publications by an authorized administrator of Scholars 
Commons @ Laurier. For more information, please contact scholarscommons@wlu.ca. 
Luba’s Theme 
Amy Clements-Cortes, PhD, MTA, MT-BC, FAMI 
The following case study is of Luba, a 4 year old girl diagnosed with Tay-Sachs disease and her 
music therapy process. Foundational information on Tay-Sachs disease is provided alongside a 
discussion of anticipatory grieving, and the death of a child.  
Foundational Concepts 
Tay Sachs Disease 
Tay Sachs Disease is a rare genetic disorder that destroys nerve cells in the brain and spinal cord.  
It is caused by mutations in the HEXA gene that prevent the substance GM2 Ganglioside from 
breaking down. In turn, this causes an accumulation of this substance which leads to progressive 
neuron damage.  In infancy, a child with Tay-Sachs Disease appears healthy.  At age 3-6 months, 
their development slows down and their muscles weaken, causing them to lose motor skills like 
crawling or turning over.  Seizures, vision and hearing losses, intellectual disabilities, and 
paralysis may be experienced as the child ages.  Children with Tay Sachs Disease generally only 
live until early childhood (U.S. National Library of Medicine, 2013).   
Anticipatory Grieving 
Anticipatory grief was first defined by Lindemann (1944) as feelings or symptoms of grief in 
someone who has not experienced actual bereavement, but instead is threatened by a possible 
upcoming death.  Friedman (1967) suggests that anticipatory grief looks similar to general grief 
but takes place over a longer span of time.  In parents of a dying child, anticipatory grief may 
show itself as a renewed interested in other children and past hobbies, limited hope, (Friedman, 
1967) discussing the possibility of the child’s death, grieving in anticipation of the loss, thinking 
what the future would be like without the child, acknowledging that the child is going to die, 
discussing the child’s death with the child, planning the type of death they want, making funeral 
preparations, and beginning to disengage themselves emotionally from the child (Rando, 1983). 
 Friedman (1967) further suggests that anticipatory grieving is a positive experience that 
can help a parent control their feelings of grief when the death finally occurs.  Specific 
behaviours may help parents experience a positive amount of anticipatory grief, including 
receiving detailed information from health care professionals and being able to take care of and 
hold their child before death (Rini & Loriz, 2007).   
Death of a Child 
The death of a child can provoke feelings of depression, anger, vulnerability, hopelessness, and 
fear with almost all parents experiencing intense loss (Arnold, Gemma, & Cushman, 2005).  In 
addition the death may affect parents’ relationship with remaining children causing them to be 
overly cautious, anxious, and guarded with other children; or experience a better relationship 
(Arnold, Gemma, & Cushman, 2005).  Spouses may also experience marital strain (Arnold, & 
Gemma, 2008).  On the other hand, bereaved parents reported feeling stronger, more sensitive, 
more courageous (Arnold, Gemma, & Cushman, 2005), and more compassionate (Arnold & 
Gemma, 2008).  Some factors that were helpful to parents processing their grief included inner 
strength, family support, friendship, spirituality or religion, support groups and individual 
counseling (Arnold, Gemma, & Cushman, 2005).   
Introducing Luba 
Luba was a 4 year old girl of Romanian descent. She was diagnosed with Tay–Sachs disease at 
18 months. Luba and her parents, Luis and Anna were referred to music therapy by the social 
worker at the pediatric hospital as part of the out-patient package of services to be provided to 
the family. The interdisciplinary team believed that music therapy could be useful in helping the 
parents in their grieving process, as they were in denial regarding Luba’s prognosis. All music 
therapy sessions were provided in the family’s home, two times per week for a total of 18 
sessions.  
 Luis immigrated to Canada and began working in the 90’s. After two years he returned to 
Romania and married Anna and the couple relocated to Ontario, Canada. They had no family in 
Canada but a small supportive circle of friends. Luis and Anna had struggled to conceive for 
several years and were overjoyed when they learned Anna was pregnant with Luba. Luba was 
born 6 weeks premature and began her life with health issues attributed to premature birth. It 
only surfaced around the six month mark that Luba was suffering from advanced symptoms that 
could be attributed to Tay-Sachs disease.  
The Therapeutic Process 
Luba’s therapeutic process consisted of 18 sessions that can be divided into 4 phases: 
“Assessment”, “Creating an Environment of Love” (Sessions 2-6),   “Luba’s Theme (Sessions 7-
14), and “Saying Goodbye” (Sessions 15-18) which included planning funeral music and 
assisting the grieving process with Luis and Anna.  
Assessment 
During the assessment session it surfaced that Luis and Anna were greatly in denial about Luba’s 
prognosis. They explained that the doctor had told them that Luba would die soon, but they 
believed that God would answer their prayers. 
 Luba had flaccid muscle tone and was no longer able to sit up. She was confined to her 
bed and no longer able to speak. Luba had limited head movement but appeared very much 
aware of her surroundings and maintained long stretches of eye contact during the music 
interactions. Luba’s parents were invited and encouraged to participate in the sessions but only 
Anna accepted in this stage and sat at Luba’s bedside.  
 The assessment session was used as a way to determine Luba’s responses to a variety of 
musical instruments, timbres and musical styles. She tracked the sources of the music with her 
eyes and engaged in extended eye contact with her mother and therapist when they sang. 
 In collaboration with Anna, the following goals were established for music therapy 
sessions. 
1. To provide opportunities for: a) sensory stimulation, b) cognitive stimulation and c) 
social interaction. 
2. To provide distraction from pain 
3. To provide and enhance opportunities for relaxation 
4. To provide alternative methods for Luba and her parents to interact. 
 Music therapy was implemented to promote a family-centered approach to medical care. 
Henneman & Cardin (2002) and Kardis, Modell, & Peyser’s (2003) studies have shown the 
benefit of this approach for patients and their families. This model takes into account the 
patients’ psychosocial states and how that impacts their physical health while also placing 
significance on the needs of the family who form the patients’ support system.  
Sessions 2-6 “Creating an Environment of Love” 
Sessions 2-6 focused on engaging Luba in music, and creating an environment in the home 
where love was conveyed to Luba. Luba’s favourite songs were the primary focus and the lyrics 
of several songs were changed to personalize them for Luba. I encouraged Anna to sing with me, 
and at times she did but would become labile and held Luba’s hand as I sang. Luis would peek 
into sessions but was not yet able to participate. It appeared that perhaps Luis had begun the 
anticipatory grieving process in terms of disengaging from interaction with Luba as described 
above by Rando (1983). 
 I created a CD of the songs used in sessions for Luis and Anna to play for Luba and 
provide further opportunities for them to interact with her.  
Sessions 7-14 “Luba’s Theme” 
During these sessions a focus continued to be on using Luba’s favourite songs. Additionally 
several hymns also became a part of the receptive music interventions. Slowly, Luis began to 
join in the music therapy sessions with the amount of time he stayed in sessions increasing from 
10 minutes to the full length of the sessions by week 11. Hymns were important for Luis and 
Anna, and singing them for Luba provided a supportive platform for them to begin to understand 
Luba’s prognosis and essentially begin the anticipatory grieving process. 
It was also during this period that songwriting was introduced and together with the 
therapist, Anna and Luis composed several songs for Luba. These songs were recorded and given 
to Luis and Anna by the therapist.“Luba’s Theme” became her signature song played at the 
beginning and end of each session commencing in session 10. Bailey (1984) avers that music 
therapy can stimulate cognitive function, improve communication between family members and 
enhance relationships and was introduced into the therapeutic process for these reasons.   
 In these sessions the iso-principle was implemented and was used to ease Luba’s labored 
breathing and pain.  The iso-principle is defined as matching music to the client’s current 
emotional or physical state using the elements of music such as tempo, rhythm, volume, and 
mood (Altschuler, 2001).  Clinical improvisation was also a central part of the work at this stage.  
These sessions ended with a musical relaxation and Luba’s theme.  
Luba’s Theme 
You are a shining star 
Always bright and warm 
Your smile lights up our hearts 
And fills them up with love 
 
We loved you Luba before you were born 
And we love you more each day 
That love will always be there 
And grows stronger everyday 
 
Your eyes are large and beautiful 
Your hair is golden sun 
You are our sunshine 
Our ever bright rays of light! 
 
Sessions 15-18 “Saying Goodbye” 
Luba died after session 15. During the last three sessions with this family, music therapy 
involved planning music for Luba’s funeral and supporting Anna and Luis in the grieving 
process. Luba’s parents requested that I provide the music at Luba’s funeral and together we 
selected the important hymns for the service. In addition to these hymns, Anna and Luis 
confirmed they wanted “Luba’s Theme” to be a prominent part of the funeral service music.  
After the funeral, the last two sessions were held with Anna and Luis to help facilitate and 
initiate their grieving process.  In these sessions songwriting and improvisation were the primary 
tools that led to emotional expression and discussion between Anna and Luis. Wolfe and Waldon 
(2009) assert “music serves as a carrier wave on which troubling feelings may ride. In other 
words, [music] becomes a concrete representation of that which was previously difficult to put 
into words” (p.48).  The words that Anna and Luis could not speak to each other they were able 
to put into a song and we used this song as a springboard for discussing those difficult questions 
and emotions that were raised in their lyrics.  
Conclusion 
McDonnell (1984) acknowledges that “In family sessions, child and parent often have pleasure 
together for the first time” (p. 55) and that songwriting, moving to music and singing are 
effective interventions in supporting children and their families in reducing anxiety, alleviating 
emotional strain and increasing verbalization.  This was reflective of the experience of Luba and 
her parents. Music therapy sessions provided the family with a new way of interacting through 
songwriting, moving to music and singing. These interventions were successful in enhancing and 
facilitating communication between Luis and Anna while reducing emotional angst and 
providing a way of communicating with Luba. Improvisation and song writing were also central 
interventions in facilitate the grieving process for Luis and Anna.  
 
 
 
 
 
 
 
References 
Altschuler, I. (2001). A psychiatrist’s experience with music as a therapeutic agent. Nordic 
 Journal of Music Therapy, 10(1), 69-76.  
Arnold, J., & Gemma, P.B. (2008). The continuing process of parental grief. Death Studies, 32, 
 658-673. 
Arnold, J., Gemma, P.B., & Cushman, L.F. (2005). Exploring parental grief: Combining 
 quantitative and qualitative measures. Archives of Psychiatric Nursing, 19(6), 245-255.  
Bailey, L. M. (1984). The use of songs in music therapy with cancer patients and their families. 
 Music Therapy, 4, 5-17.  
Friedman, S. B. (1967). Care of the family of the child with cancer. Pediatrics, 40(3), 498-504. 
Henneman, E. & Cardin, S. (2002). Family-centered critical care: A practical approach to 
 making it happen. Critical Care Nurse, 22(6), 12-19.  
Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of 
 Psychiatry, 101(2), 141-148. 
Rando, T.A. (1983). An investigation of grief and adaptation in parents whose children have died 
 from cancer. Journal of Pediatric Psychology, 8(1), 3-20. 
Rini, A., & Loriz, L. (2007). Anticipatory mourning in parents with a child who dies while 
 hospitalized.  Journal of Pediatric Nursing, 22(4), 272-282. 
U.S. National Library of Medicine (2013). Tay-Sachs disease. Retrieved April 2, 2013 from  
 http://ghr.nlm.nih.gov/condition/tay-sachs-disease  
Wolfe, D. E. & Waldon, E. G. (2010). Music therapy and pediatric medicine: A guide to skill 
 development and clinical intervention. Silver Spring, MD: American Music Therapy 
 Association.  


Luba’s Theme

Wilfrid Laurier University

Wilfrid Laurier University Scholars Commons @ Laurier Music Faculty Publications Faculty of Music 2013 Luba’s Theme Amy Clements-Cortés Wilfrid Laurier University, notesbyamy2@yahoo.ca Follow this and additional works at: https://scholars.wlu.ca/musi_faculty  Part of the Marriage and Family Therapy and Counseling Commons, and the Music Therapy Commons Recommended Citation Clements-Cortés, A. (2013). Luba’s theme. Imagine, 40(1), 70-73. This Article is brought to you for free and open access by the Faculty of Music at Scholars Commons @ Laurier. It has been accepted for inclusion in Music Faculty Publications by an authorized administrator of Scholars Commons @ Laurier. For more information, please contact scholarscommons@wlu.ca. Luba’s Theme Amy Clements-Cortes, PhD, MTA, MT-BC, FAMI The following case study is of Luba, a 4 year old girl diagnosed with Tay-Sachs disease and her music therapy process. Foundational information on Tay-Sachs disease is provided alongside a discussion of anticipatory grieving, and the death of a child.  Foundational Concepts Tay Sachs Disease Tay Sachs Disease is a rare genetic disorder that destroys nerve cells in the brain and spinal cord.  It is caused by mutations in the HEXA gene that prevent the substance GM2 Ganglioside from breaking down. In turn, this causes an accumulation of this substance which leads to progressive neuron damage.  In infancy, a child with Tay-Sachs Disease appears healthy.  At age 3-6 months, their development slows down and their muscles weaken, causing them to lose motor skills like crawling or turning over.  Seizures, vision and hearing losses, intellectual disabilities, and paralysis may be experienced as the child ages.  Children with Tay Sachs Disease generally only live until early childhood (U.S. National Library of Medicine, 2013).   Anticipatory Grieving Anticipatory grief was first defined by Lindemann (1944) as feelings or symptoms of grief in someone who has not experienced actual bereavement, but instead is threatened by a possible upcoming death.  Friedman (1967) suggests that anticipatory grief looks similar to general grief but takes place over a longer span of time.  In parents of a dying child, anticipatory grief may show itself as a renewed interested in other children and past hobbies, limited hope, (Friedman, 1967) discussing the possibility of the child’s death, grieving in anticipation of the loss, thinking what the future would be like without the child, acknowledging that the child is going to die, discussing the child’s death with the child, planning the type of death they want, making funeral preparations, and beginning to disengage themselves emotionally from the child (Rando, 1983).  Friedman (1967) further suggests that anticipatory grieving is a positive experience that can help a parent control their feelings of grief when the death finally occurs.  Specific behaviours may help parents experience a positive amount of anticipatory grief, including receiving detailed information from health care professionals and being able to take care of and hold their child before death (Rini & Loriz, 2007).   Death of a Child The death of a child can provoke feelings of depression, anger, vulnerability, hopelessness, and fear with almost all parents experiencing intense loss (Arnold, Gemma, & Cushman, 2005).  In addition the death may affect parents’ relationship with remaining children causing them to be overly cautious, anxious, and guarded with other children; or experience a better relationship (Arnold, Gemma, & Cushman, 2005).  Spouses may also experience marital strain (Arnold, & Gemma, 2008).  On the other hand, bereaved parents reported feeling stronger, more sensitive, more courageous (Arnold, Gemma, & Cushman, 2005), and more compassionate (Arnold & Gemma, 2008).  Some factors that were helpful to parents processing their grief included inner strength, family support, friendship, spirituality or religion, support groups and individual counseling (Arnold, Gemma, & Cushman, 2005).   Introducing Luba Luba was a 4 year old girl of Romanian descent. She was diagnosed with Tay–Sachs disease at 18 months. Luba and her parents, Luis and Anna were referred to music therapy by the social worker at the pediatric hospital as part of the out-patient package of services to be provided to the family. The interdisciplinary team believed that music therapy could be useful in helping the parents in their grieving process, as they were in denial regarding Luba’s prognosis. All music therapy sessions were provided in the family’s home, two times per week for a total of 18 sessions.   Luis immigrated to Canada and began working in the 90’s. After two years he returned to Romania and married Anna and the couple relocated to Ontario, Canada. They had no family in Canada but a small supportive circle of friends. Luis and Anna had struggled to conceive for several years and were overjoyed when they learned Anna was pregnant with Luba. Luba was born 6 weeks premature and began her life with health issues attributed to premature birth. It only surfaced around the six month mark that Luba was suffering from advanced symptoms that could be attributed to Tay-Sachs disease.  The Therapeutic Process Luba’s therapeutic process consisted of 18 sessions that can be divided into 4 phases: “Assessment”, “Creating an Environment of Love” (Sessions 2-6),   “Luba’s Theme (Sessions 7-14), and “Saying Goodbye” (Sessions 15-18) which included planning funeral music and assisting the grieving process with Luis and Anna.  Assessment During the assessment session it surfaced that Luis and Anna were greatly in denial about Luba’s prognosis. They explained that the doctor had told them that Luba would die soon, but they believed that God would answer their prayers.  Luba had flaccid muscle tone and was no longer able to sit up. She was confined to her bed and no longer able to speak. Luba had limited head movement but appeared very much aware of her surroundings and maintained long stretches of eye contact during the music interactions. Luba’s parents were invited and encouraged to participate in the sessions but only Anna accepted in this stage and sat at Luba’s bedside.   The assessment session was used as a way to determine Luba’s responses to a variety of musical instruments, timbres and musical styles. She tracked the sources of the music with her eyes and engaged in extended eye contact with her mother and therapist when they sang.  In collaboration with Anna, the following goals were established for music therapy sessions. 1. To provide opportunities for: a) sensory stimulation, b) cognitive stimulation and c) social interaction. 2. To provide distraction from pain 3. To provide and enhance opportunities for relaxation 4. To provide alternative methods for Luba and her parents to interact.  Music therapy was implemented to promote a family-centered approach to medical care. Henneman & Cardin (2002) and Kardis, Modell, & Peyser’s (2003) studies have shown the benefit of this approach for patients and their families. This model takes into account the patients’ psychosocial states and how that impacts their physical health while also placing significance on the needs of the family who form the patients’ support system.  Sessions 2-6 “Creating an Environment of Love” Sessions 2-6 focused on engaging Luba in music, and creating an environment in the home where love was conveyed to Luba. Luba’s favourite songs were the primary focus and the lyrics of several songs were changed to personalize them for Luba. I encouraged Anna to sing with me, and at times she did but would become labile and held Luba’s hand as I sang. Luis would peek into sessions but was not yet able to participate. It appeared that perhaps Luis had begun the anticipatory grieving process in terms of disengaging from interaction with Luba as described above by Rando (1983).  I created a CD of the songs used in sessions for Luis and Anna to play for Luba and provide further opportunities for them to interact with her.  Sessions 7-14 “Luba’s Theme” During these sessions a focus continued to be on using Luba’s favourite songs. Additionally several hymns also became a part of the receptive music interventions. Slowly, Luis began to join in the music therapy sessions with the amount of time he stayed in sessions increasing from 10 minutes to the full length of the sessions by week 11. Hymns were important for Luis and Anna, and singing them for Luba provided a supportive platform for them to begin to understand Luba’s prognosis and essentially begin the anticipatory grieving process. It was also during this period that songwriting was introduced and together with the therapist, Anna and Luis composed several songs for Luba. These songs were recorded and given to Luis and Anna by the therapist.“Luba’s Theme” became her signature song played at the beginning and end of each session commencing in session 10. Bailey (1984) avers that music therapy can stimulate cognitive function, improve communication between family members and enhance relationships and was introduced into the therapeutic process for these reasons.    In these sessions the iso-principle was implemented and was used to ease Luba’s labored breathing and pain.  The iso-principle is defined as matching music to the client’s current emotional or physical state using the elements of music such as tempo, rhythm, volume, and mood (Altschuler, 2001).  Clinical improvisation was also a central part of the work at this stage.  These sessions ended with a musical relaxation and Luba’s theme.  Luba’s Theme You are a shining star Always bright and warm Your smile lights up our hearts And fills them up with love  We loved you Luba before you were born And we love you more each day That love will always be there And grows stronger everyday  Your eyes are large and beautiful Your hair is golden sun You are our sunshine Our ever bright rays of light!  Sessions 15-18 “Saying Goodbye” Luba died after session 15. During the last three sessions with this family, music therapy involved planning music for Luba’s funeral and supporting Anna and Luis in the grieving process. Luba’s parents requested that I provide the music at Luba’s funeral and together we selected the important hymns for the service. In addition to these hymns, Anna and Luis confirmed they wanted “Luba’s Theme” to be a prominent part of the funeral service music.  After the funeral, the last two sessions were held with Anna and Luis to help facilitate and initiate their grieving process.  In these sessions songwriting and improvisation were the primary tools that led to emotional expression and discussion between Anna and Luis. Wolfe and Waldon (2009) assert “music serves as a carrier wave on which troubling feelings may ride. In other words, [music] becomes a concrete representation of that which was previously difficult to put into words” (p.48).  The words that Anna and Luis could not speak to each other they were able to put into a song and we used this song as a springboard for discussing those difficult questions and emotions that were raised in their lyrics.  Conclusion McDonnell (1984) acknowledges that “In family sessions, child and parent often have pleasure together for the first time” (p. 55) and that songwriting, moving to music and singing are effective interventions in supporting children and their families in reducing anxiety, alleviating emotional strain and increasing verbalization.  This was reflective of the experience of Luba and her parents. Music therapy sessions provided the family with a new way of interacting through songwriting, moving to music and singing. These interventions were successful in enhancing and facilitating communication between Luis and Anna while reducing emotional angst and providing a way of communicating with Luba. Improvisation and song writing were also central interventions in facilitate the grieving process for Luis and Anna.         References Altschuler, I. (2001). A psychiatrist’s experience with music as a therapeutic agent. Nordic  Journal of Music Therapy, 10(1), 69-76.  Arnold, J., & Gemma, P.B. (2008). The continuing process of parental grief. Death Studies, 32,  658-673. Arnold, J., Gemma, P.B., & Cushman, L.F. (2005). Exploring parental grief: Combining  quantitative and qualitative measures. Archives of Psychiatric Nursing, 19(6), 245-255.  Bailey, L. M. (1984). The use of songs in music therapy with cancer patients and their families.  Music Therapy, 4, 5-17.  Friedman, S. B. (1967). Care of the family of the child with cancer. Pediatrics, 40(3), 498-504. Henneman, E. & Cardin, S. (2002). Family-centered critical care: A practical approach to  making it happen. Critical Care Nurse, 22(6), 12-19.  Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of  Psychiatry, 101(2), 141-148. Rando, T.A. (1983). An investigation of grief and adaptation in parents whose children have died  from cancer. Journal of Pediatric Psychology, 8(1), 3-20. Rini, A., & Loriz, L. (2007). Anticipatory mourning in parents with a child who dies while  hospitalized.  Journal of Pediatric Nursing, 22(4), 272-282. U.S. National Library of Medicine (2013). Tay-Sachs disease. Retrieved April 2, 2013 from   http://ghr.nlm.nih.gov/condition/tay-sachs-disease  Wolfe, D. E. & Waldon, E. G. (2010). Music therapy and pediatric medicine: A guide to skill  development and clinical intervention. Silver Spring, MD: American Music Therapy  Association.  

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