Dr Stanley Read is an infectious disease consultant at SickKids Hospital in Toronto who was there at the beginning. A friend of The Teresa Group since its inception, Dr Read has known all of the children and families affected by HIV who have connected with SickKids Hospital and has a unique lens on how the impact of HIV on families and children has evolved over the years. We interviewed Dr Read in his office at SickKids Hospital.
The Teresa Group: Dr Read, you helped found The Teresa Group in the 1980’s. Can you share with us your memories of that time and what stands out most for you?
[Founder] Penelope [Holeton]
definitely. Penelope came to see me. She was an unusual and special woman with hidden talents who had a dream of starting a support group for children. She came to see me to discuss this idea and I thought it was wonderful. I invited her to get involved and create this group as part of the SickKids program. She was very definitive about it and was clear that it should not be incorporated into the bureaucracy of the hospital. She wanted a stand-alone project that was autonomous and had a close relationship with SickKids.
TTG: How has the work and the organization changed over the years? What has stayed the same?
The broad objective has stayed the same. Programs have of course developed and diversified over time. Early on it was mostly kids with hemophilia and kids who’d been infected through blood transfusions, so often the children were HIV+ and the parents were not. There was a small number of people at first – about 40 children and that stayed pretty consistent for a while.
In the early days, Dr Susan King at SickKids had set up a surveillance system in Canada to track children born to HIV+ moms. In 1985 screening of the blood system started which halted new infections through blood transfusions. By 1988 when the SickKids program started they had a look-back program for transfusion recipients to track them down. In the early days, there was an emphasis on helping families with the process of a child dying. We all went to lots of funerals and spent lots of time doing home visits.
In the late 1980s we saw a few families from the Caribbean and this increased over time but often people were diagnosed late and were often close to death. Then later we started to see more children from Africa who had emigrated to Canada with their families. Now the clinic is very diverse – many children of African heritage, also children from SE Asia, Asia and Eastern Europe. The number of adopted children has increased – known HIV+ and adopted from other countries.
In the late 1980s there were some drugs available for treatment but it wasn’t until the mid-90s when we had effective treatment and that really changed everything.
TTG: What is your favourite Teresa Group memory over the years?
It has to be when Penelope first came to see me. She made such a huge impression on me. I had her pegged as a “church lady” and wasn’t prepared for how much of an activist she was. She was very strong and sure of what she wanted [to keep TTG as an autonomous organization] – and she was right! The success of the organization is a testament to that. Penelope really made the impression but there are also lots of examples of support that families get from The Teresa Group, for example the Infant Formula program which is a very important aspect and the summer camp where the kids have such a great time.
TTG: If you had to sum up The Teresa Group in one word what would it be and why?
Support. But that doesn’t capture the whole picture. Other words are warm, caring and linkages. The linkages are important. It is like “support” is in the centre and then there are multiple linkages to Teresa Group programs as well as other parents and families, other organisations and other supports.
TTG: What would you want to tell a couple expecting their first baby or a family with young children/teenager who has been referred to The Teresa Group for the first time?
I’d tell them about the supports available, important support for new moms and babies. Also links to a continuum of care that is open ended. Through this, people start helping each other as they become more comfortable – people learn it through interactions with The Teresa Group. The Teresa Group gives parents security to expand their comfort zone and pass that on to others. This also applies to children as they get older. Many are well-adjusted due to the level of support from both SickKids and The Teresa Group to help them live normal lives.
An outstanding development of the SickKids clinic program is the groups run at the hospital by The Teresa Group. This links up to the “Penelope Perspective”
of insisting that The Teresa Group remain at arm’s length - separate from the hospital with close links. This lends itself to the success of the groups where the kids can explore so many issues with Teresa Group staff who are not part of the clinic staff. This is particularly important for teens.
In closing, I wanted to wish The Teresa Group well for its 25th anniversary.
It is a time of celebration of the organization and our partnership.