Facebook Pixel Code
About Sickkids
About SickKids

Staff perspectives

In celebration of the 25th anniversary of the HIV Comprehensive Care Program at SickKids, members of the team share their thoughts and insights on their experiences caring for children and families with HIV. In just 25 years, what was once a death sentence has become a chronic condition, and several members of the team have been part of this journey from the very beginning.

Stanley Read

Dr. Stanley Read
Years at SickKids: 33
Years in the HIV Comprehensive Care Program at SickKids: 25

I came to SickKids from New York in 1980, and at the time it was clear that something was happening in the adult clinics in New York. It was first described as an outbreak of an unknown virus. In 1983, the virus was identified and in 1985 the first antibody tests were available. In 1988 we received funding from the Ministry of Health for our program at SickKids. Initially we cared mostly for children with haemophilia and then other children who had been infected through blood transfusions. I remember meeting the first child whose virus was transmitted from the mother. The child was admitted through emergency with a rash, big liver, big spleen and overall declining health. Later we found out that the child’s mother had died of AIDS, so we did the testing and found that this child was HIV-positive too. The disease was already fairly advanced and there wasn’t much we could do other than treat the symptoms. The child died in hospital shortly thereafter. We saw many patients like this, but have come a very long way since then. Children born with HIV since 1996, which effective treatment became available, are all living well with their HIV and we have had no deaths since that time.  

It takes a multidisciplinary team to care for our patients and families because the disease affects so many areas of a person’s life, and affects every family differently. As a team we work together to address the multifaceted challenges that our patients face, and together we bring caring, experience and different perspectives so we can better understand and support these families.   

Back to top

Georgina MacDougall

Georgina MacDougall, HIV clinic coordinator
Years at SickKids: 24
Years in the HIV Comprehensive Care Program at SickKids: 12
I started working at SickKids on September 11, 1989 on the Infectious Diseases unit. I cared for some of the earliest HIV-positive patients. I remember them being very sick, very uncomfortable and very unhappy.  Often they were alone or with a family member other than their parents because the parents were too sick to be at the hospital with them. They had chronic diarrhea, bloated abdomens, skinny little arms and legs, as well as poor appetites.  Many required feeding-tubes for sustenance. The stigma was so bad, even among health-care providers. People were scared to get “it”; double gloving, gowning, some even declined to care for children with HIV. We have come a long way in the 24 years I’ve worked at SickKids.  Through it all, the HIV team was always a pillar of acceptance, strength, support and knowledge for the rest of us to emulate. Seeing our patients grow up, transition to adult care and come back as parents of uninfected children is one of the most significant and rewarding outcomes that I am most proud to be a part of.   

Back to top

Robyn Salter

Robyn Salter, social worker
Years in the HIV Comprehensive Care Program at SickKids: 25

I've stayed with the HIV program since it started in 1988 because it's such a privilege to be part of the support system for children, teens and families coping with HIV and the high level of stigma associated with it. In the early days members of the HIV team saw much illness and death of children and parents. We were often focused on issues of terminal illness, palliative care and the needs of children orphaned by the HIV-related deaths of their parents. Over the 25 years, as medical treatment has improved, the role of social work in the HIV program has changed to focus on supporting children and parents with HIV to live long and healthy lives while managing the stigma of HIV and supporting mothers and fathers of new babies going through infant HIV testing.  Now the main issues for families are about medication adherence, supporting parents through the process of disclosing HIV status to their HIV-positive children, teenagers growing up and transitioning to adult health care, newcomer immigration and resettlement support, income support, maintaining drug insurance, making disclosure decisions, finding work and study programs, helping family members to communicate with each other, using services with and without disclosure of HIV according to who needs to know and who does not need to know about their HIV status.

Even with these hopeful changes, the stigma of HIV continues as the most difficult psychosocial issue for children, teens and parents. As well as the difficult issues, however, there are many joyful times.  For example, when medications work well, children and parents with HIV have good health, babies test negative, people disclose their HIV status and receive support, and children we've known since infancy grow up as wonderful young people, living healthy lives and having babies with negative HIV status.

The rewards of being with the families come from being part of their long-term support system as they find strength, hope, information and resources to live as normally as possible. One of the most rewarding interventions is working with HIV program staff to organize support groups for teenagers with HIV which are held in our clinic. The groups are led by social workers from The Teresa Group, a child and family community support agency. During a recent evaluation of the group program, young group members expressed their thoughts about attending clinic groups. Some examples of their statements are:   

  • “It’s like talking to someone who knows how I feel”
  • “I feel like I am not the only person who has this, like other kids do too”
  • “You can just have other kids that are like you, you can just sit there and talk with them. You could see how they are and are no different than anybody else”

These young group members are growing up with a safe place to meet and support their peers, manage stigma and learn about HIV and medical treatment.        
All the staff members in the HIV program are dedicated to the care of the patients and families. We share the passion of using our professional and personal skills to work together for the well-being of the children and parents. Our long-term relationships with the families through their struggles and strengths inspire us to continue our work.  Over the 25 years we've seen much sadness, loss, fear, hope, strength and happiness together.

Back to top

Mary Lou Smith, neuropsychologist
Years at SickKids and in the HIV Comprehensive Care Program: 25

My role is to document the neurodevelopmental status of our patients and make appropriate recommendations for community or school-based interventions when we find areas of difficulty.  25 years ago, many of the children had significant neurological impairments. The virus has an affinity for the brain in children, and as a result many of the patients had very striking neurological and neurocognitive disorders. This was often due to late diagnosis and because the medications available at that time were not very effective for treating the virus in the brain.  

In the early days, some people asked me why I wanted to work with these patients, since many of them died. My response was that in a tertiary care children's hospital, there are often patients who die, but these children still deserve the best quality treatment to optimize their quality of life.

Today, the picture is much more optimistic. We are better at diagnosing HIV in children and much better at treating it.  It is not a death sentence and many of our patients live long and normal lives.  Unfortunately, the stigma and the fear of being identified as someone with HIV has not changed.  These factors are particularly difficult for teens as they struggle to establish their identities and to establish themselves in relationships and within peer groups.

Overall my role has been the same over the years, but the nature of the problems I see and the patient population has changed. Today, I not only see HIV-positive children, but also uninfected children who have been exposed to antiretroviral medication in utero. I work with them to determine whether pre – or perinatal exposure to these drugs has an impact on neurocognitive development.

Back to top

Alda Fernanded-Penny

Alda Fernandes-Penney, psychometrist
Years at SickKids and the HIV Comprehensive Care Program: 23
My role is to conduct assessments that document the neurodevelopmental status of children in the HIV clinic and, with neuropsychologist Mary Lou Smith, make appropriate recommendations for community or school-based interventions when we find areas of weakness or difficulty. When I started in the HIV program 23 years ago, many of the children had significant delays or deficits.  Often, the children were already demonstrating impairments when they were diagnosed and the treatment regimes were limited.  Many people asked me whether I was afraid to work with these children because they thought I could “catch” HIV. Others questioned why we assessed the children since many of them would die at a young age.  

Fortunately, things have changed since I started with the program.  Children are living longer and more normal lives. They are “graduating” to adult centres and several have grown up and had children of their own.  HIV can now be diagnosed earlier and the medications are more effective in treating the virus. Sadly, what remains the same is the families’ fear of other people finding out their HIV status.  It isolates them and often prevents them from developing relationships with others.  In addition to the HIV clinic, I have worked in many other clinical programs over the past 23 years. What I’d like to stress to people is that children in our program are no different than any other children. The needs and desires are those of most other children… they want to laugh, play, learn and be loved.    

Back to top

Debra Louch

Debra Louch, Infectious Diseases nurse coordinator
Years at SickKids: 24
Years in the HIV Comprehensive Care Program at SickKids: 19
I have worked in the Infectious Disease Department at SickKids for 24 years; the last 19 years have specifically been in the HIV and Infectious Diseases clinics as a Nurse Coordinator. At SickKids we have been fighting the battle against paediatric HIV alongside our patients for 25 years. Our families come from all walks of life and all races, but the one thing they all seem to share is resilience in the face of an often overwhelming diagnosis. 25 years ago, with limited treatment options, a diagnosis of HIV was a death sentence. The effects of HIV and AIDS on a child in the late 1980s and early 1990s were terrible to witness. As a new nurse in Infectious Diseases, the HIV-infected children I cared for were very ill. One quickly realized that life was not fair, and it was difficult to understand how so many families were forced to deal with such a challenging and debilitating illness. One young child I cared for, had both parents infected and admitted to other hospitals at the same time that the child was in hospital. The child’s grandparent was the only one that could be at bedside. I can close my eyes and still see that little face perfectly.  Thankfully medical advancements in the mid-90s changed the face of HIV. Now most of our patients are well and we are watching them grow into productive young adults with hope for the future. I have been privileged to witness the courage of our patients and the strength of their families and caregivers.

Back to top

Wayne Moore

Wayne Moore, patient information clerk
Years at SickKids and in the HIV Comprehensive Care Program at SickKids: 16
What has changed since I started working in the program back in 1997, is that the patients and parents that come through our clinic are not dying. There was a time when almost every year either a patient died or the patient's parents died because of HIV or AIDS. Now with modern HIV medicine, they are living much longer and can have full lives. HIV is now a chronic illness instead of a terminal illness. But the families are still facing many challenges.

As the patient information clerk for the clinic, I sit at the front and get to know all the patients and families pretty well. What resonates with me is the various reactions the kids have when they learn that they are HIV-positive. Some have no reaction, others don’t quite understand yet and just want to get back to playing, and some have been extremely upset. Seeing how hard this is for the families, and how the team helps to support them through these challenges makes me more empathetic to what the patients have to deal with from a young age. I specifically remember calming a patient down and encouraging the child to talk to their parents and the team, and let them know that we are here to help.

What impresses me about my colleagues in the HIV Program is their dedication and their love for working with these families. Our team is quite unique. On a personal level, I would say I'm very lucky to be working with such an awesome team; they are a second family to me. You really don't hear that too often. The relationships take years to build and I am very fortunate to have such an amazing group of people in my life. I will never trade them in for the world.  

I know our patient-families really appreciate our services. I think you could say they see us as the "Big Brother" watching over them.  They feel secure and protected, and put a huge amount of trust in us.  It’s a very special bond.  

Back to top

Ari Bitnun

Dr. Ari Bitnun
Years at SickKids: 16
Years in the HIV Comprehensive Care Program at SickKids: 9

HIV-infected children are among the most vulnerable children in Canada.  The condition is associated with a lot of unjustified stigma so the fact that we’re able to help them so significantly is a real privilege. Some of the patients we follow in clinic were gravely ill as infants when I first started my fellowship. It has been very rewarding to see them recover, mature and live healthy, normal lives.

Back to top

Dr. Arlette Lefebvre, psychiatrist
Years in the HIV Comprehensive Care Program at SickKids: 25
In the beginning I was dealing with a lot of depression, sadness and even dementia in kids whose neurological status was affected by the HIV virus. Now my role is mainly the assessment of disclosure readiness, and after disclosure how it has affected the child or teen. Throughout entire life, stigma has been my passion and my enemy. I have been working to dispel stigma throughout my whole career. I work with children of all kinds of disabilities, and about 90 per cent of my practice is to encourage kids to be open and to disclose to their friends and educate their friends about their illness; whether it be cerebral palsy, a brain injury, or something else. Generally speaking, once people know, they are more understanding and more supportive. We can often turn stigma into heroism if you give a child the tools for educating others effectively and painting a positive picture of what the disease is all about. Unfortunately with HIV it’s a different story, because for many of our families who come from cultural communities where it is still very seriously stigmatized, they cannot possibly face disclosure because they know they will be shunned from their community. So many things have improved but this is still an area that could be improved and that we continue to support our patients and families through.

Back to top

Sandra Lowe

Sandra Lowe, volunteer
Years in the HIV Comprehensive Care Program at SickKids: 12

I have had the honour of being a volunteer in the SickKids HIV Clinic since 2000. What makes this clinic so special is the interaction between patients, caregivers and staff; it's like being part of an extended family. Living with HIV cannot be easy for the children but the staff ensure that they are able to access all kinds of help including group meetings, summer camps, etc. We all try to make sure their appointments are as much fun as possible! For 25 years the staff in the clinic has stayed the same, this tells you how dedicated they all are.

Back to top