Fertility Issues

Discussion

This study aimed to explore the current level of awareness and knowledge about infertility amongst children and young people. The responses raise a range of issues for consideration. It is clear from the responses to the two vignettes that adults need to be wary of adopting stereotypical notions about children and young people's understandings of the impact of (in)fertility on human emotions and relationships. Both males and females revealed equally insightful thinking at times and equally...

Intersex disorders

Intersex conditions consist of a 'blending' or mix of the internal and external physical features usually classified as male or female Creighton and Minto 2001 . Prevalence is difficult to ascertain due to different definitions of the condition, although range between 0.1 and 2.0 per cent Blackless et al. 2000 . These are very rare conditions and must be managed in centres familiar with them. A multi-disciplinary team MDT that includes paediat-ric surgeons, urologists often paediatric and adult...

Methods of assisted conception

Should methods of natural family planning fail then there are currently a number of methods of assisted conception that can be used. These are summarized in Table 6.2 and range from a relatively simple and inexpensive procedure such as intra-uterine insemination (IUI) to more sophisticated procedures such as in vitro fertilization (IVF) and intra-cytoplasmic sperm injection (ICSI). The choice of which technique to use (for any couple) is dependent on a range of factors and includes the 1....

Introduction

Researchers are increasingly giving young people the opportunity to express opinions on matters that affect them directly (Balen 2000). This view of young people as 'active citizens' (Balen etal. 2006) is backed by, for example, the UN Convention on the Rights of the Child (United Nations 1989) and, in the UK, The Children Act (1989) and The Human Rights Act (1998) (Department of Health 2000 Lansdown 1998 Lansdown, Waterson and Baum 1996). Because of our interest in ill health, disability and...

Selfconcept body image sexual identity

Cancer has the potential to influence development of self-concept, a key task, among young people (Rowland 1990). Alterations in physical appearance, including weight changes, hair loss, amputations, placement of catheters to facilitate treatment administration, scars and alterations in skin colouration and texture, not only make children and teens feel different from peers but also may represent frightening changes in the body with an adverse impact on self-esteem. Fears that the body will...

Development of sexuality and sexual identity

Sexuality is a dynamic concept and is about much more than sexual activity and sexual orientation alone. It includes what being male or female means to us and how we express our gender how we feel about our bodies, about our appearance and about physical pleasure whom we are attracted to and what we choose to do about it and, if we have intimate relationships, how we behave with our partners. Our ability to reproduce comes from our sexual behaviour and our feelings about our sexuality and...

Family illness

Life-threatening illnesses in childhood are seen as family illnesses as everyone in the family is affected when children are ill. HIV is unique both because, although not an illness as such, everyone is impacted by the condition and because more than one person in the family has it. Sometimes, every member of the nuclear family is HIV-positive. As a result, there are 'emotional' connections to the condition for everyone and every family member plays a role. Given the nature of HIV, each of...

Young people citizenship and disadvantage understanding fertility and ethnicity

We start by exploring how received ideas of legitimacy and interpretation inform engagement with minority ethnic people who have fertility problems. 'Institutional racism' has recently become a popular explanation for the inability of services to respond to the needs of an ethnically diverse society. In the UK context this can be attributed directly to the Macpherson Enquiry (1999) into the death of Steven Lawrence.1 Macpherson provided the term with moral authority, which found legal...

Life tasks and challenges in adolescent and young adult cancer survivors

The end of cancer treatment, returning to school or work, leaving home, dating, starting a family and or a career and establishing regular and appropriate health care are all important stages of young adult cancer survivors' lives. These life stages carry with them the potential for new understandings of cancer's impact, new worries or concerns, and new challenges to physical health and abilities. It may be that at certain life transitions some survivors find their worries realized, find it...

Freezing and longterm storage of sperm

The science that underpins successful sperm cryopreservation has been reviewed many times (see Fuller and Paynter 2004) and involves a complex understanding of physics and biology. However, in simple terms, cryo-storage is able to keep sperm in a state of'suspended animation'. The ability to keep sperm frozen in this state relies upon the addition of a cryo-protectant to the sperm sample before it is cooled to the required temperature. While there are a number of different formulations of...

Restoration of fertility

At present our ability to preserve and store ovarian cortex is far ahead of the development of the methods that are needed to realize the fertile potential of this tissue. Two approaches are being explored at the present time. To date, the most viable clinical option for fertility restoration in girls and young women after ovarian tissue cryopreservation is centred around orthotopic or heterotopic autografting of cryopreserved tissue (Figure 5.1). Indeed there have now been a number of reported...

Riskbenefit analysis

The prize that beckons at the end of the trail that starts with diagnosis is not hard to describe. The medical treatment programme on which the young person is due to embark may ensure their survival at the cost of several significant side-effects. One price that the individual may have to pay is that their reproductive capacity may be permanently impaired. Cryopreservation offers the promise of being able to bank tissue or gametes pre-operatively so that the individual's reproductive...

Who says what when and to whom

The above discussion has focused on aspects of fertility and reproductive health, although as briefly discussed in the introduction, a wide range of sexual health issues are relevant to adolescents with CF. Given the risks of pregnancy, it is especially of concern that sexually active young women with CF are less likely to use contraception than otherwise healthy young women, and have erroneous beliefs about infertility and pregnancy risk (Sawyer, Phelan and Bowes 1995). It is equally of...

The course of the lives of children who are HIVpositive

This particular group of children and young people have lived during two very different times. Initially there was a sentiment that children should not know their diagnosis. This was because society had not made peace with the idea of children diagnosed with a condition that was both potentially infectious and life-threatening. Currently there is more of a focus on informing children of their diagnosis (American Academy of Pediatrics 1999) and research suggests the benefits to the child and...

Not the purview of the paediatrician

Coming to recognize HIV-positive youth as sexually interested and active imposes a struggle for both health and mental health providers in paediatrics A 12-year-old denied any interest in sex when talking to herdoctor. The team was taken by surprise when they received a call from the school saying the 12-year-old was found having oral sex with a peer. Perhaps due to their own discomfort or disbelief that children should be sexually active, providers may overlook or deny signs that suggest...

Children and young people who are HIVpositive the journey forward

Studies show children with perinatal HIV infections who are ageing into adolescence are typically healthy and may have no outward symptoms of the disease (Thorne et al. 2002). The majority are on several medications (ibid.) and must confront the difficulties of adherence to a complex medical regimen. They tend to be a heterogeneous group in terms of drug history and sexual history despite their health condition, they are like their HIV-negative counterparts in that they are vulnerable to risky...

Many unanswered questions

In the process of understanding the development of sexuality and intimacy in relationships for HIV-positive children, many areas worthy of assessment and exploration emerge. Among the questions for enquiry are 1. Do you think about sexual behaviour differently if you grow up knowing that your parent is HIV-positive 2. What are children's feelings for parents from whom they contracted the condition 3. Do you think about sexuality differently if you grow up HIV-positive 4. Is it influenced by the...

Jane Davies

There are many, many different reasons for infertility and here is my family's experience. It will resonate with some of you and not with others. So hold that in your mind as I tell you my story We found out by chance that our son was almost certainly infertile when he was just 16. We were told by the experts not to tell him because, they said, 16 isn't a good time to tell a young man that he's probably infertile. Now I absolutely agree with them that it isn't a good time, but is 17 any better...

Legal framework

The Human Fertilisation and Embryology Act entered the UK statute books in 1990 and was implemented on 1 August 1991. It covers the majority of, though not all, assisted conception treatments and requires that centres providing such treatments or carrying out proscribed research should be licensed and inspected annually. It set up a regulatory body - the Human Fertilisation & Embryology Authority (HFEA) - with the function of inspecting centres and issuing licences, producing a Code...

Implications for HIVpositive children and young people

To be a teenager and to have a sexually transmitted disease that was not acquired through sexual transmission opens up a whole new arena for observation. The emotional implications have not been studied. When you are born HIV-positive, there is a feeling of having no control over your life. Nothing you did got you to be HIV-positive and nothing you can do can get you to be HIV-negative. Disclosing one's HIV status places a great strain on relationships, meaning there is no such thing as a...

Identity diversity and difference young peoples experience of fertility difficulties

Understanding barriers to providing responsive and equitable service provision for minority ethnic populations suggests further themes relevant to our debate. Ethnicity is a notoriously difficult concept to define and conceptual confusion sometimes occurs (Bradby 2003). In some ways, the multi-faceted nature in which we have come to understand 'ethnicity' has advantages as we attempt to tackle disadvantages and discrimination (Chattoo, Atkin and McNeish 2004). If nothing else, it reminds us of...

Unintended Catharsis Through Intended

As an artist, I was already using images of myself before I experienced illness at first hand. However, this took on a new dimension when, during my second year of a Fine Art degree, my diagnosis and treatment for testicular cancer necessitated a period of leave from university. During chemotherapy, I kept a sketchbook of pencil drawings in which I recorded much of the emotion and trauma of my treatment. When I had completed my treatment, I created a body of work based on my experience. I used...

Male infertility

Approximately 98 per cent of males with CF are infertile. The genetic abnormality that results in CF is associated with aberrant embryological development of the reproductive portion of the mesonephric (wolffian) duct. At birth, this results in variable absence of the vas deferens, seminal vesicle, ejaculatory duct and body and tail of the epididymis3 (see Figure 11.2). While active spermatogenesis occurs in the testis, sperm are unable to be transported from the testis due to congenital...

Sexual health

Sexual health was defined by Mace, Bannerman and Burton (1974) as a capacity to enjoy and control sexual and reproductive behaviour in accordance with social and personal ethics freedom from fear, shame, guilt, false beliefs and other psychological factors inhibiting sexual response and impairing relationships freedom from organic disorders, diseases and deficiencies that interfere with sexual and reproductive functions. (p.10) While other definitions have been explored since then, this one...

Openness sex education and sexual health services

Parents and teachers are often nervous about addressing the sensitive and potentially embarrassing subject of sex education. While some adults may fear that once young people know that sexual intercourse exists they will immediately rush off to try it, the evidence is to the contrary (Kirby 2002). Those countries that appear to offer the most effective sex education have the lowest teenage pregnancy rates and a higher average age for the start of sexual activity (Alan Guttmacher Institute...

Abnormalities of female genital tract and intersex disorders

Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH or Rokitansky Syndrome) occurs in 1 5000 female births and may be associated with renal tract anomalies (15-40 ) or anomalies of the skeletal system (10-20 ). Girls have spontaneous development of secondary sexual characteristics as ovarian tissue is present and functions normally. The external genitalia have a normal appearance but the vagina is short and blind ending. Hormone treatment is not required as ovarian oestrogen output is normal and...

Psychosocial development in young people with CF

Growing up with a chronic illness such as CF has both a physical and emotional toll on young people's psycho-social development. The growth and pubertal delay common in CF has been shown to have a negative effect on young people's self-esteem and body image and other people's perception of their age and development (Sawyer etal. 1995). This is further complicated by the other obvious physical markers of CF, such as surgical scars, the visibility of permanent intravenous access ports and body...

Parental illness as a factor

Knowing of the advanced illness or mortality of a parent has a dramatic effect on the developing child. One study examined adolescent adjustment before and after an HIV-related parental death (Rotheram-Borus et al. 2005). Sexual risk behaviours increased after death and were sustained over the subsequent year and beyond. While the authors attribute this to adolescent developmental intimacy, it also may reflect the teens' need to 'connect' in the face of such a loss and combat ongoing feelings...

Preservation of oocytes

Oocytes Cryopreserve

The current options available to preserve the fertility of young patients, irrespective of their diagnoses, are limited. The methods used include assisted reproductive techniques such as in vitro fertilization (IVF), which enable collection and freeze storage of embryos before myeloablative4 cancer treatment (Atkinson et al. 1994). However, assisted reproduction is costly and stressful, carries no guarantee of success, may create 'orphan embryos' if the woman dies and requires that the patient...

My path to parenthood

As adolescent and young adult cancer survivors age and mature, they appear to lack critical information necessary to make informed choices about family planning including regarding their cancer and its treatment types and dosages of treatment in some cases, even the type of cancer they had and knowledge about potential long-term physical effects (Kadan-Lottick etal. 2002). Given that there is a general lack of knowledge about the anatomy and physiology of reproduction among adolescents in...

Life ambitions

Research has begun to focus on children and young people's priorities for adulthood. Roberts and Sachdev's (1996) UK study examined young people's (12-19 years) social attitudes amongst the wealth of data generated were findings about ambitions. Fifty-nine per cent of their participants rated their most important life ambition (ranked first or second) as being happy, while 27 per cent wanted to have a family. Good health was important for 24 per cent of the sample, closely followed by having a...

Conclusion

Despite gradual improvement and an increasing awareness of the complex nature of culturally sensitive provision, health and social care providers experience difficulties in meeting the care needs of various minority ethnic populations. Debates about ethnicity, sexuality and fertility, including for those making the transition to adulthood, reflect these problems. The lack of research and informed policy discussion, however, makes it difficult for us to offer a specific conclusion. Nonetheless,...

Years old 18 months after my relapse

I sit with my friends waiting for my kids' races. Last week my scans were clear - no cancer anywhere. Today I am celebrating with my friends so our ice-box contains strawberries and a bottle of wine. I overhear a bored dad saying, 'I hate sports day, don't you ' Immediately I think back to last year when my cancer was at its worst and I sat through sports day crying for the children I might not see grow up. But now things are different and I am 'all-clear'....

Bethany five years old four years afier my relapse

'Mummy, Megan's grandpa died yesterday and she is very sad. She cried in class and Miss gave her a cuddle.' Bethany's face is pinched and worried and my heart lurches ominously. 'Cancer. He was very old.' She pauses and I know she wants to ask more. 'Mummy, you had cancer didn't you ' 'So .are you going to die soon ' Then she looks at me and her lip is trembling and her eyes are brimming with tears and my heart breaks for her. 'My friend said you will die like Megan's grandpa because you had...

What is Turner Syndrome

Turner Syndrome is a common genetic condition found in approximately 1 2000 live female births. A syndrome means a collection of features and for those with TS this includes a combination of characteristic physical features and a complete or partial absence of the second sex (X) chromosome in some or all cells (Saenger et al. 2001). Described and named by Henry Turner (1938), nearly all those with the syndrome have short stature and insufficiently or non-functioning ovaries and thus face future...

The structure of the book

While there is an increasing literature that acknowledges sexuality in adults with physical impairments or health conditions, there is a marked lack of writing about childhood or adolescent sexuality and fertility issues. Contrast this to the burgeoning industry that surrounds teenage sexual health but which uses a narrow definition of sexual risk-taking and limited underpinning understanding of teenage sexuality and results in a concentration on pregnancy avoidance and reduction in sexually...

From Early Adolescence to Adulthood

Edited by Rachel Balen and Marilyn Crawshaw Jessica Kingsley Publishers London and Philadelphia Front cover artwork Arrow by Dan Savage 'The arrow to the left-hand side of this piece depicts the arrow that was drawn on my leg for the operation. That such a rudimentary method was employed by the doctors prior to a major operation seemed to me to be rather basic. As I found out more information about my condition, I began to reflect on my own life. This self-reflection is symbolized by the use of...

Genetic causes of male infertility

Males with Klinefelter Syndrome (also known as 47,XXY or XXY after an additional X chromosome these individuals have incidence of 1 in 1000 males), some of whom also have learning disabilities, invariably have azoospermia.11 Prior to puberty the seminiferous tubules (which make up the bulk of the testis) develop normally but during puberty a massive destruction of the seminiferous epithelium (tissue lining of the tubules) occurs. XYY males (47,XYY incidence of 1 in 1000) have varying degrees of...

Future developments in fertility preservation in males

Although the cryopreservation of ejaculated (or surgically recovered) mature spermatozoa remains the mainstay of fertility preservation in males, there are a number of areas of current research which, if successful, could revolutionize fertility preservation. The first is based on an approach to try and actually prevent the death or damage to the population of stem (sperm-producing) cells in the testis that typically occurs following exposure to radiation or alkylating agents (see above)....

Sarah Clough

Mum and Dad told me I had Turner Syndrome when I was 15. They had just found out themselves. My first reaction and gut instinct was 'What man will want me now ' Mum and Dad reassured me that any man worth his 'salt' would want me for me not for what I may or may not be able to give him. So the process of coming to terms with infertility had begun. OK, so I was infertile but did it change me I had Turner Syndrome but was I really that different Yes, deep down I was, my chromosomes were...

Question four what about my children

Survivors worry greatly about their offspring's risk of inheriting cancer. Studies have shown that this is the greatest source of concern amongst survivors (American Society for Reproductive Medicine 1995 Stephen and Chandra 1998). This occurs even in situations where cancer type is not part of an inherited syndrome, despite reassuring evidence to the contrary (Green et al. 2003). At present, no increased risk of cancer in survivors' offspring has been demonstrated and yet amongst cancer...

Methodology

Local Research Ethics Committees' approval was obtained. Single interviews were undertaken that focused on the young men's and parents' retrospective perceptions of the content and style of communication within the family and with professionals surrounding the decision-making about, and management of, sperm storage following a diagnosis of cancer. A qualitative approach was used to allow respondents to raise issues pertinent to them (Robson 1998). Prompts were made either for clarification or...

The Study

Our study focused on responses from a population of children and young people in mainstream education rather than specifically from those receiving medical treatment for illness, living with a health condition or disability or receiving special education. This sample was chosen in order to provide some benchmark information since discussions about infertility and possible fertility preservation options sometimes have to be entered into at a time of diagnosis that is, before any psychological,...

Mllerianuterine anomalies

Uterine anomalies occur in between 3 and 10 per cent of the fertile female population and are often discovered by chance during coincidental investigations for infertility They have usefully been classified by the American Society for Reproductive Medicine into five groups. Women with uterine anomalies are usually asymptomatic, unless there is obstruction to menstrual flow, when cyclical pain may be experienced. While infertility per se is rarely caused by uterine anomalies, they may be...

The complexities of decisionmaking

When young people themselves, or the parents in the case of a younger child, are faced with the prospect of agreeing to a medical intervention that might preserve their reproductive options in the future, they must contend with many uncertainties. What is the status of the intervention on offer What are the potential risks and benefits of participating - or not Who is to make this momentous decision and how might they be best advised In addition, there is the potential in fertility preservation...

Findings

Despite the small numbers being interviewed, their experiences are recounted here as they echoed or illustrated some of the concerns expressed in other parts of the study - for example those around the consent process, including the impact of the need for urgency even though there were already significant levels of stress for all around the cancer diagnosis. Also of concern was the uncertainty among service providers about the format and manner in which to provide relevant information. The...

Achieving change and improving outcomes developing successful fertility services

The final discursive practice with which we need to engage embodies another fundamental key tension. The critical emphasis of current literature on ethnicity, health and social care is perhaps understandable and has successfully highlighted the negative consequences of racism, marginalization and unequal treatment (Mason 2000). Policy and practice, however, have been less successful in translating these insights into improvements in service delivery (Atkin 2004). Consequently, practitioners...

Developmental considerations

When post-pubertal adolescent males are invited to provide semen samples for storage it is probably fair to assume that most will have the cognitive capacity to consent. As the technologies associated with cryopreservation and potential re-implantation of genetic material develop, younger patients will be in a position to benefit from storage of tissue. Should parents then make ethical decisions on their child's behalf or can minors still be included in the choices to be made about their future...

Research or treatment

There is a sound scientific basis for the belief that cryopreserved tissue taken from young people prior to treatment for childhood cancer might allow them to beget their own children in the foreseeable future. However, there are many more links to be demonstrated in the evidence chain before these procedures can achieve the status of an established treatment. So the honest way to describe the interventions on offer might be promising, but experimental (Grundy etal. 2001a). This is precisely...

Menstrual cycle abnormalities

Amenorrhoea (the absence of menstruation) may be temporary or permanent (usually of at least six months' duration). It is best classified according to its aetiology, or site of origin, and can be subdivided into disorders of the hypothalamic-pituitary-ovarian-uterine axis generalized systemic disease. The failure to menstruate by the age of 16 in the presence of normal secondary sexual development, or 14 in the absence of secondary sexual characteristics, warrants investigation. This...