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Portrait of a cystic fibrosis doctor

The life and career of Dr. Terrence Gillespie

This story contains a correction

In one of the early years of Dr. Terrence Gillespie’s career a fellow pediatrician asked him why he even bothered caring for children with cystic fibrosis.

“What are you treating this disease for? These kids are going to die. Why spend all this money when these kids are going to die?”

It was the late 1960s, less than 30 years since CF had been given a name and proper description. The disease itself wasn’t new — references to sickly children with salty skin believed to be cursed and unlikely to survive appear in medical textbooks as early as 1595.

There is even an old adage captured in an 18th-century book of German-Swiss children’s songs that warns: “Woe to that child which when kissed on the forehead tastes salty. He is bewitched and soon must die.”

Salty skin is one of the distinguishing features of the disease, which is the most common fatal inherited diseases in North America. A defective gene causes the body to produce thick mucus that chokes the lungs and clogs the digestive system.

In the 1960s, when Gillespie took over the pediatric cystic fibrosis clinic at the IWK hospital in Halifax, children diagnosed with CF rarely lived to see their 10th birthdays. But Gillespie had insight into the future of care for CF patients and knew there was hope.

He told the pediatrician the reason CF research mattered was because CF patients deserved a chance: “This could be your child. This could be anybody’s child.”

In his 26-year medical career, Gillespie arguably set the standard of care for CF care centres across Canada. In his early days as a doctor, conversations about death and dying were commonplace. But Gillespie was a part of the evolution of CF care. As time and treatment progressed, he watched as his patients started to live to be adults.

He quickly developed a reputation for being an empathetic doctor who devoted endless hours to the care of his patients, rushing back to the hospital after hours to check on patients, spending hours at a child’s bedside, just to keep them company or make them laugh.

Whenever there was a need, the nurses were to call him and he would show up. It didn’t matter what hour of the day or night it was, and he would come in,” said CF nurse co-ordinator Paula Barrett, who worked with Gillespie in the later years of his career.

“Whenever there was a need, the nurses were to call him and he would show up.”

Paula Barrett

Gillespie is now 89 years old and has been retired for nearly as long as he practised medicine. In a room in his Halifax home — just a short walk from the IWK hospital — he still keeps stacks of old paper documents from his days treating CF patients. Despite being in the early stages of Alzheimer’s and losing his eyesight, when he pours over the records, the stories behind the names come to life again.

The names of a North Sydney, N.S., family catch his eye and he remembers the mother, a coal miner’s wife. All of her five children were diagnosed with the fatal genetic disease. Gillespie says he only knew two of them — the last two.

“[The older daughter] was the first patient I had who died here; she was a very sick little girl,” he remembered.

She died in September 1967, just one year after Gillespie took over the CF clinic. Her younger sister lived to be 15.

“She was in high school and I remember the mother crying and I asked, ‘what’s wrong,’” he asked the grieving mother. “She said, ‘I’m so happy. She was my first child that ever got to go to school.”

Early years

Gillespie got into medicine a little later in life. He went to medical school at Dalhousie University but took a five-year detour into the air force to help pay his tuition. He returned to Halifax in 1960 as a resident in pediatrics at the IWK under Dr. William Cochrane, who two years before established the second pediatric CF clinic in Canada.

As his residency neared its end, Gillespie started to apply for post-grad fellowships, thinking he would specialize in immunology or hematology. His path changed when he went to Cochrane’s office to talk about a post-grad opportunities in New York. Then Cochrane slid a letter across the table.

“And even before I sat down he just reached on his desk and he handed me a letter,” Gillespie said.

The letter was addressed to every other head of pediatrics in Canada, from Dr. LeRoy Matthews in Cleveland. The American doctor was looking for Canadian physicians to come to Ohio and train in children’s chest disease, particularly CF.

Gillespie’s first instinct was to dismiss the letter. He told Cochrane it “wasn’t his bag,” and he wanted to study in New York. At his mentor’s urging, he eventually relented and went to Cleveland to see what Matthews had to offer.

“In the two years I was in Cleveland, I saw six patients die out of over 300 patients they had seen. In Halifax, I had seen six patients, five of them died.” Dr. Gillespie

In his final days of his residency before leaving for Cleveland, Gillespie spent the night at the bedside of a four-year-old girl with CF in the final stages of respiratory failure. He remembers it was just the two of them.

“I stayed up all night with her, just alone. The child was dying,” he said. “There was nobody there for her.”

Gillespie didn’t know much about the disease at that time, but sat with the girl until she died just before 5 a.m. He phoned Cochrane who met him for breakfast in the hospital cafeteria and they talked about CF and the progressive work Matthews was doing in Cleveland.

“He said, ‘[Matthews] has been called a fake, a liar, a freak, a quack, every derogatory of misfitting name that you can possibly imagine. I’ve heard about this man, but they’ve got him all wrong.’”

Cochrane was eager to mimic the success of the Cleveland clinic for pediatric CF patients in the Maritimes. He wanted Gillespie to learn their methods.

Gillespie spent two years learning from Matthews, whose clinic boasted the best survival rates in North America. His methods were simple: every patient started a full course of treatment in hospital from the first day of diagnosis and then seen every six weeks in clinic. The team knew from the outset that CF children’s lung function would inevitably plummet and adopted an aggressive approach to respiratory treatment.

“In the two years I was in Cleveland, I saw six patients die out of over 300 patients they had seen. In Halifax, I had seen six patients — five of them died,” he said.

In July 1966, after two years in Cleveland, Gillespie returned to the IWK in Halifax. Soon after, he went to the CF clinic with Cochrane and followed as the head of the clinic saw his patients.

“I didn’t say boo, but the wheels were going around in my head saying, ‘I’m going to change that and that and that,” he said.

To Gillespie, seeing success in the care of CF children in the Maritimes meant implementing everything he learned from Matthews in Cleveland. He didn’t realize it at the time, but Cochrane had hand-picked him to take over the CF clinic.

“When we left clinic that morning, he turned to me and said, ‘OK Terry, it’s your baby,’” Gillespie said. “And he turned around and walked down the hall and he never said another word to me.”

Care and compassion

Gillespie spent the next 26 years treating children with cystic fibrosis. Along with the Halifax clinic, he set up a clinic in P.E.I., where he would travel several times a year to treat children on the Island.

“I set [the clinic] up like I did in Cleveland and we got the same type of results. All of a sudden survival went straight up” Gillespie said.

Gillespie knew early diagnosis was crucial in CF, so in the first year that he took over the clinic, he told the head of the hospital about something he had seen in Cleveland, the simple test used to diagnose kids with CF — the sweat test. With one phone call, Gillespie had his test and he emphasized its importance to the young doctors training at the hospital.

“Any damn time at admission rounds there was a kid that could have anything that looked like cystic fibrosis, I would ask about the results of the sweat test, just to make the point about this,” he said.

Soon after he helped to establish the first pediatric pulmonary function lab at the IWK so the clinic could better monitor the lung function of its patients.

“I had a battle royale with the government to pay for the tests, which they wouldn’t do,” he said. “They would pay for the old geezers with chronic obstructive lung disease fine. They didn’t pay for the children.”

Once again, Gillespie took up the fight for something that would help improve the lives of his patients. He eventually got his way and took up a new battle — fighting the government once again to ensure CF drugs were covered under the provincial health-care system. In the end, a law was passed that CF drugs and equipment would be covered for patients and families.

“Families need to know that their CF physician is battling along with them, that they are not alone.”

Dr. Mark Montgomery

In his first 10 years at the helm of the clinic, with the exception of one baby only diagnosed after death, Gillespie saw no deaths among newly diagnosed patients in his care.

“That revolutionized the whole attitude towards CF,” he said.

Through Gillespie’s methods and as treatments continued to evolve and improve, life expectancy among CF patients in Atlantic Canada started to climb. By 1966, about one-third of CF patients at the clinic were over 10 and eight years later, seven of the 76 patients were in their 20s.

Paula Barrett still works as the nurse co-ordinator for the IWK pediatric CF clinic, which carries on Gillespie’s legacy by consistently ranking in the top five of Canada’s 42 CF clinics, and as the top clinic for lung function. Barrett said despite being retired, Gillespie still periodically checks in to see how his now-adult patients are doing.

“He loved the kids and the families and he fought for the kids to get good care in here,” Barrett said. “He just was very dedicated, would come in whenever and stay for how long they wanted. He was known for just spending hours with families, whatever they needed to sort of to help out with the situation.”

Patients would often come to Halifax from across the Maritimes, often without so much as a referral to see him.

On one particular occasion, a mother from New Brunswick arrived in Halifax with five kids — believed to all have CF — to see Gillespie. Gillespie met them at the bus stop to give them a ride to the hospital, where he gathered some money from nurses to be able to feed the family dinner.

Gillespie’s tireless compassion for his patients is something that sticks with Dr. Mark Montgomery, more than 30 years after he trained at the IWK.

“Dr. Gillespie demonstrated the commitment required to assist families in CF care. He highlighted the importance of knowing each person with CF, and knowing their family and resources,” Montgomery said. Montgomery went on to become the director of the pediatric CF clinic in Calgary.

Montgomery says he remembers his mentor as a steadfast advocate for CF who was continuously trying new approaches and thinking about how to improve the lives of people with CF, never settling for less.

“His greatest legacy is to demonstrate to young physicians that CF care is both professional and personal, and that families need to know that their CF physician is battling along with them, that they are not alone, but they have an advocate and an encourager and an expert right there with them throughout all that life has to throw their way,” he said.

When a new diagnosis was made, Gillespie made a point to sit down with the family, spending hours answering any questions they might have about the disease.

“We’d take a few cigarettes, coffee, usually in a classroom and we just talked, not a lecture on cystic fibrosis. I would ask them, what were you told about this disease? What do you know about it?” Gillespie said. “And you talk English, you don’t talk medicine, so people understand.”

The model trains at the IWK were one of Dr. Gillespie's passion projects.
The model trains at the IWK were one of Dr. Gillespie’s passion projects.   Carly Stagg

In 1977, Donna Thompson and her husband sat down with Gillespie. Her two children had been diagnosed with cystic fibrosis. Her four-month-old daughter Jane was hospitalized with a collapsed lung and was incredibly sick.

Thompson and her husband had been planning to go away on a trip, which they started to cancel once their daughter was diagnosed, but Gillespie found out and urged the couple to still go.

“He made a beeline for us,” Thompson said. “He said, ‘You are not to cancel that trip. You need the trip. That’s the most important thing that you can do right now for your children so that you have to be in good shape to deal with this.’”

That intuitiveness from Gillespie was “a gift” that Thompson said reassured her their children would grow up to lead normal lives.

“It would be very easy to give up everything in life and think there is nothing in life but masks and physio and pills, but he was, ‘No, this is how you’re going to learn to live with this disease and you’re going to live like normal people.’”

‘Makes life worthwhile’

I n 1992, after more than a quarter century treating patients, Gillespie was 64, tired and ready to retire. His wife, Rose, saw him working day and night and knew he couldn’t go on much longer. He would spend days at the hospital, come home for dinner and go back at night, constantly on-call and ready to leap whenever the phone rang and a patient or their family needed him.

But despite no longer having a medical licence, Gillespie could never fully remove himself from the lives of CF patients. He kept in touch with staff and families, always keen to know the status of his former patients. In turn, former patients, co-workers and families worked tirelessly to have him admitted to the Order of Canada in 2008.

Gillespie says he has never stopped believing that someday a cure for CF would be found. Medical technology is getting closer with the recent invention of two miracle drugs that target the underlying cause of CF.  Today, the median survival age of people with CF in Canada is one of the highest in the world at over 50 years old, and continues to rise.

“I look back on my career and I enjoyed medicine,” Gillespie said.

“You have the satisfaction of knowing, if I do this properly and got those results, I think hey, that makes life worthwhile. And I enjoy that.”

Related Websites

Correction: Dec. 4, 2016: An earlier version of this story referred to Dr. Gillespie keeping medical records in his home, when in fact he has coded paper documents. Some identifying information about former patients has been removed.

Carly Stagg

Carly Stagg

Carly is a journalist who has worked in newsrooms in Alberta, Ontario, Nova Scotia and Hawaii. She currently works at CBC News while finishing her master's of journalism degree at University of King's College. She was diagnosed with cystic fibrosis at the age of 14 and received a lung transplant five years ago.

17 comments

  1. I had the privilege of meeting the great Dr. Gillespie when my Godchild was diagnosed with CF. I remember him telling me that CF patients have a really high IQ. He studied CF patients so much that he realized how bright they were. I was the acting mother for my Godchild since his parents three & half hours away, plus had two older children to take care of. Even though I wasn’t the real mother Dr. G understood the reason I was there & he would make sure I understood what was talking place with my Godchild. He is such an amazing & genius doctor & he deserves a lot of thank you’d from so many parents & patients. I don’t know if he ever can be replaced. Thank you Dr. Gillespie for saving my Godchild’s Ryan Boudreau life. It is difficult to replace suc a great & caring doctor. I don’t know if they make hard working doctors like Dr. Gillespie anymore. God Bless Dr. Gillespie.

  2. Dr. Gillespie was my
    “CF Doctor” as I always referred to him for many years, before he retired. He was the best darn doctor ever – so compassionate and caring and loving. He had the kindest nature. Yet, even as a young child, I felt like he was the one to obey, listen to and trust.
    I saw him in an elevator a couple of years ago while attending the Adult CF Clinic in Halifax. I recognized him instantly. As soon as I told him my name (keeping in mind it has been decades since he last saw me), he knew exactly who I was. I was so touched and honored to be in his presence.
    Thank you so much for this great article. Every doctor should aspire to be like Dr. Gillespie.

  3. I worked on 7east as as Ward Clerk in the 80′ with so many wonderful nurses, Dr Gillespie’s patients loved him,dearly, and everyone had so much respect for him,always in a great humour .Great article. thanks for sharing

  4. I worked on 7 East in the 80’s what a wonderful man and so well loved by his patients and all the staff had so much respect for him..Tks for the great story well deserved…

  5. I worked on 7 East at the IWK for many years. I know the crazy hours spent, the heart and the time Dr. G gave to the patients, their families and of course all of us, the staff. Thank you for writing this article about a great man and a great doctor!

  6. A wonderful article about a wonderful man. Nice to see him finally get the credit he so richly deserves. He was much loved by my girls Joanne and Susan.

  7. There aren’t enough words to describe what “Dr G” has done for me and others with CF.
    He literally saved my life!
    Because of him I have enjoyed a full life and lived long enough to reap the benefits of 50 years of fundraising and research.
    2 1/2 years ago I received the blessing of the new drug ‘Kalydeco’.
    All this would NOT have been possible with out the great start to life that ‘Dr G’ handed to me with years of dedication, love and compassion for me and my family.

    His word was LAW, his Heart is LOVE!

    In 1968 my parents were told by others to take me home and love me, but that I would DIE before I was 2 years old!
    DR G told them to believe otherwise!
    48 years later… we continue to believe in DR G!

  8. Thank you so much for this wonderful article. I had the privilege of working with Dr G. when I started my 36 yr career in ’78 as an RN. He was an amazing Dr who had so much compassion for his “kids”. They in turn had so much love and respect for him. You were so right that you could call him at any time of the day or night if you had a concern. I have thought of him often over the years for his compassion, teaching and caring. Hope you’re enjoying your retirement and Thank you Dr G.

  9. Dr Gillespie was an amazing man. He looked after our two children that had CF, unfortunately we have lost them to this horrible disease but will never forget this man and his knowledge and compassion. His team was amazing. God Bless him…I don’t know what we would have done without him.

  10. Dr. Gillespie gave my daughter her life back when she was 2.5years old she was being seen by our family physician and was hospitalized all the time for phenmonia or she had allergies finally a child pedestrian Dr. Charlie Brown sent her for a sweat test and it showed her salt count was high so then it was a trip to the IWK in Halifax where we learned her faith she had been diagnosed with CF That day My world changed forever she spent 6-8 weeks in the hospital going through a lot of procedures to make her quality of life better to which today I have to say with Dr. Gillespie knowledge and caring way and the CF team that followed after his retirement and by the grace of god my baby is now 29 years old doing well despite her yearly flare ups and 2 week hospital stay and also my baby also is a mommy to a beautiful little girl to which is very very healthy. I have three children but only my Karla was diagnosed with Cystic Fibrosis. Thank you Dr. Gillespie for not giving up on our CF Children.

  11. We had our son diagnosed at five weeks in 1983 and our daughter in 1985. Dr Gillespie is the most amazing doctor ever!! Excellent bed side manner, loved the kids, LISTENED, I mean, REALLY LISTENED to the parents (Which I’ve not experienced since his departure). I remember he would say “I can look at the exrays, listen with a stethoscope but he needed to hear how the patient was on a daily basis, cough, appetite, sleep, etc. Just amazing, thank you Dr. Gillespie for your care and compassion. Pat was an awesome nurse and Paula filled her shoes well. Feel very blessed that you were there for my Jim and Jessica

  12. I loved dr Gillespie. I always say I’m alive today because of him and what he did to keep our infections down.

    Xoxo
    He’s in my heart always!!!

  13. He took care of my brother but he also made the rest of his siblings feel important too! My brother is now almost 49 years old. I have the fondest memories and respect for Dr. Gillespie

  14. I had the privilege of working on the infant respiratory floor as a young nurse . He was just amazing with these children . All those pills in apple sauce and night time chest physio payed off . It was so good to see the kids go home and lead a somewhat normal life . this article brought back a lot of memories to me , thank you .

  15. Wish I had the same satisfaction back in 1972 when moving back from Calgary with a CF diagnosed 2 year old. Had to register in with IWK and met with Gillespie who literally threw meds in garbage and told me my child had bronchial problems and did not need to be in mist tent or take enzymes. Son was re-diagnosed in his mid 20’s and is under the care of Childrens hospital in Toronto as an adult with CF digestive, bowel and pancreas problems. Often wonder if his quality of life in later years would have been better if I had been more firm in Halifax with the Calgary diagnose. Something for a mother to carry for the rest of her life I guess.

  16. I had the privilege to work with this man and the children with cystic fibrosis at IWK in the late 70’s and 80’s. Truly a remarkable man, an inspiration.

  17. Thank you for the wonderful article about our wonderful and caring doctor. I’ve known Dr. Gillespie for 48 years and on occasion still have chats with him over the phone. He and Rose are a great couple.

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