Eilis Hayes Talks to Alan Mooney
Eilis Hayes is a paediatric H.I.V. liaison nurse. Eilis has worked in Africa and Romania in recent years and is now based in Dublin. She, together with other professionals, is the link between the medical world of the hospital and the lived reality of the families affected by H.I.V. and A.I.D.S. in her area of responsibility. I asked her to talk about some of the very complex issues that affect parents and children where the virus is part of their every-day reality.
Giving a diagnosis of any chronic illness to a parent – whether it’s cystic fibrosis or a cancer – is devastating but it becomes overwhelming if it’s H.I.V. It opens up the status, not only of the child who’s been diagnosed, but often other members of the family. Both parents might be infected. It also questions the status of other siblings in the family. I think the only other illness that come close in its effect on a family is cystic fibrosis in that you could have multiple children diagnosed. Yet even this fails to compare as successive generations of a family will not be affected. There is no other illness with a major social stigma attached.
Part of that stigma is that, often erroneously, there is a perceived connection with promiscuity and drug use. Globally, the risk of becoming infected with the virus is through sexual transmission but in Ireland and Scotland the main risk area is intravenous drug use. Overall, in 125 children affected by the virus whom we have identified, intravenous drug use, either by mother or her partner, underlies the presence of H.I.V. within the family unit.
It is generally believed that something socially unacceptable causes someone to have H.I.V. and in turn that adult passes it on to their child. In about 50% of the families known to me, women acquired H.I.V. infection through heterosexual contact, they have never used drugs and are not promiscuous. However, the initial perception of these parents by some health services and indeed in the community generally, is that they are irresponsible drug users because of their H.I.V. status.
H.I.V. Positive Babies
All babies born to H.I.V. positive mothers are born antibody positive but this does not mean they are infected themselves. They all have maternal antibodies in their systems for 9 months to 18 months. After birth, generally, if antibodies persist beyond 15 – 18 months, it is likely to mean that the children are producing their own antibodies in response to infection by the virus. Fortunately, only about 1 in 5 children are infected but 4 will grow up in a family affected by H.I.V. – often witness to illnesses and death of parents and siblings. These children, while not infected will be profoundly affected. They will suffer repeated disruption of normal education and development, and ultimately untimely separation from their parents. These other children are often forgotten about because all the attention is on the infected parent or sibling.
Of the group of 37 children in whom H.I.V. infection has been confirmed, seven have died from an A.I.D.S. related illness. An additional 11 have met the A.I.D.S. definition. Rather than focusing on whether or not a child has A.I.D.S., we focus on how symptomatic the child is. Overall, although the situation has improved significantly, this is a condition that progresses twice as rapidly in children as it does in adults.
When a mother is given the diagnosis that her baby is anti-body positive she immediately wants to know – has her child got A.I.D.S. – is he/she going to die? In peoples minds H.I.V.=A.I.D.S.=Death. There is a need to put this in perspective and give more realistic information. The average survival of a child with H.I.V. infection at birth is 9 years and will undoubtedly increase as medical therapies continue to improve. There is also a need to help the family cope with the reality of the ongoing medical interventions that are necessary, even at times when the child does not appear to be clinically ill. There is a great deal of secrecy surrounding these families. Parents spend a lot of time and energy protecting their affected or infected children from the realisation that H.I.V. is in the family. They don’t want their children stigmatised or ridiculed at school or in the neighbourhood. In our group of families, only one is open about their H.I.V. status.
Web of Lies
One of the major difficulties for families is that they can become caught in a web of lies. What have they told this person or that person? What do they say to questioning neighbours if they are asked about their regular hospital visits? What do you say when someone asks what’s wrong with your child?. What’s wrong with you? What do parents tell other brothers and sisters who are not infected? (Alan’s comment – it’s like outbreaks of sexually transmitted diseases like syphilis in previous centuries where infected people were ostracised and were forced to keep the secret and live on the edge.)
Families need support and the issue of who knows is fundamentally important. Many families have not included even their own extended families. From our professional point of view, we respect the wishes of families but we do encourage them to try to find ways of getting the support they need, especially within the extended family. We have come across parents who are very sick but will not go for medical treatment because there’s nobody to look after the children or because they cannot afford the time to be hospitalised. We will often work with them to try to help them identify even one other person who might be supportive. It can go wrong; for example, we know of cases where a family friend has been informed and has not crossed the threshold since then.
Fear of Rejection
A real fear for H.I.V. families is that they will be rejected. The question what will they know about us? is often raised. Outpatient clinics are a very stressful area because you don’t know who’s going to be there and they are public places where sometimes a tell-tale question from a hospital worker (“what blood test are you having?”) may give the game away – at least in the mind of a parent who may be deathly afraid of inadvertent disclosure.
On a more positive note, together with the parents, we have informed some schools where an infected child attends. Our experience is that we have had a good reaction. Our way is to sit with the teacher and to explain that one of the parents of a child in his/her class has asked that we talk to them because the child is attending hospital for an immune deficiency. We see what that means to the teacher first and go on to explain that if there was an outbreak of chicken-pox or measles it could be quite harmful for the child in question. We look at their usual first aid precautions. If a child falls down and bleeds, what are their protocols? We might go on to say the immune deficiency is caused by a virus and that the virus is H.I.V. We encourage questions and we also express the hope that only the class teacher and the principal will know of this information about the child, because nobody else needs to know. Issues of confidentiality are then addressed.
It is difficult to talk about H.I.V. infection with infected children. A degree of protection is necessary for the sake of the infected child. Parents are reluctant to raise issues that might worry a child unduly or raise complex questions that may be difficult to explain or understand. Yet as the cohort of children grows, it is imperative that they have an understanding of their situation. Secrecy by parents is an added burden to the child. For parents, informing their child of the diagnosis raises huge issues of guilt and responsibility for the child’s infection, in the parent. Parents see their child as the innocent party – they didn’t do anything wrong – so why did they get the virus? Many of our parents report that no matter how well things are going for them, they wake up in the morning to the reality of H.I.V., the virus is there. Even when their children are well and they try to be a normal family, there is a struggle just to get on with life without it taking over entirely. For some there is the added reality that their lives are chaotic anyway due to substance abuse.
Frustration and Heartache
One of the biggest issues for me on a personal level is that I am dealing with parents who are my own age group – late 20s to early 30s. I see a parent sick and a child sick at the same time. I see fragmentation of services where one parent is in a particular hospital and the child is in another. The other parent who may be sick also tries to visit both and look after the other healthy siblings. Here I’m creating a word picture of the frustration and heart ache that goes with the virus. Resources are limited, we have one social worker covering the case loads of four consultants, whereas the H.I.V. caseload would justifiably occupy a full-time medical social worker. Similarly, there is one psychologist available to the general hospital.
Sometimes I will take mixed groups of children away for a break. Children will talk about their diagnosis and their medication. I have seen what happens when, for example, a child with cystic fibrosis asks a child with H.I.V. why they are coming to hospital and they simply freeze and look blank either because they don’t know or because they have been told not to tell.
I brought a five year old to Lapland to see the real Santa Claus. About three weeks after we returned this child said to me, “You know I couldn’t even tell my teacher or my school friends I had met the real Santa. When she comes to see me at the hospital and if I am talking with another family, she walks straight by me because she knows that’s what she’s supposed to do.”
There are a lot of issues around disclosure and its implications. We have tried to set up a structured support group at our hospital, but parents thought they were attending the hospital enough and did not want to have to come again. We have gone on to arrange occasional social evenings where parents can meet and talk. A doctor is usually there to answer questions and to explain treatment regimes that are often very aggressive on the child. Sometimes these evenings can be difficult for families. A mother who may be (or have been) an intravenous drug user may have to listen to others vociferously decrying such people. Some may not come because of the guilt feelings they carry. For most, some experience of marginalisation and isolation is an inevitable consequence of their H.I.V. status.
Of the group of infected children mentioned earlier, thirty survive and among this group almost 50% have had one or both parents die of an A.I.D.S. related illness. In one instance where a parent has died, the actual cause of death was meningitis and that is what was named publicly as the cause of death. H.I.V. and A.I.D.S. are not talked about to the child similarly infected. This child knows about the regimen of drug therapy mother was on, it is the same regimen for the child. The question is there – if mother died and she was on the same drugs as me … ?
The death of parents raises the question of childcare and the reality is that within our Irish structure this responsibility falls to the extended family, especially the grand-parents. Even before a death occurs there is a great deal of anxiety because the very idea that parents might not be around for their children emphasises the reality of the illness. Multiple childcare arrangements also cause disturbance in both infected and affected children: Who am I? Who’s minding me today? Where?
In a family where the issues of H.I.V. are enormous, the burdens of secrecy, bereavement and illness weigh heavily on young shoulders. There are a growing number of children living in families with at least one individual who is H.I.V. positive. Parents of our affected children spend so much effort protecting their children from stigmatisation and discrimination. As professionals, we need to alleviate people’s fears by reducing the incidence of further isolation and hardship. Such families needs are myriad. No one deserves this affliction. No one deserves the isolation that surrounds so many families who are trying to live a normal life.