Something wonderful happened in my breed recently: the gene responsible for Juvenile Dilated Cardiomyopathy (JDCM) in Toy Manchester Terriers was discovered and a genetic test was made available. Instantly, as we had always hoped, cardio moved into the category of ‘no big deal’. It’s something we can test for now with a simple cheek swab and breeders can easily manage it within their breeding programs in the same way we have dealt with von Willebrand’s Disease for so many years.
It was a long and difficult road to get to that test though – a road littered with regrets, missteps and frustrations. If you had been sitting in our office as the email announcing success was sent you would have seen a glimpse into the heartache of several decades work as my mother instantly dissolved into tears. Anyone who has ever met her will understand that this simply doesn’t happen. Don’t get me wrong, she weeps over every maudlin commercial and sappy YouTube video she sees…but she never actually cries. And yet, as that email went out her entire face crumpled and her shoulders began to shake.
Now, some Manchester people will be rolling their eyes at this point expecting an article singing the praises of the wondrous Kelly crusade for cardiomyopathy. If that’s what you’re looking for though, you’ll need to look elsewhere. This post is NOT intended to in any way take credit for the discovery of the JDCM test. That honour belongs to everyone who took part -- the researchers, the most recent study lead, Michelle Barlak, the breeders and owners, donors and breed clubs.
What it IS about, is working through and sharing my own experiences and feelings. Because the most overwhelming feeling I have looking back on the evolution of the study that eventually cracked the code of this disease is one of sadness and regret. Even as I celebrate the fact that no puppy need die of cardio in our breed ever again, I can’t shake the selfish feeling that I wish I had never gotten involved.
So, my entry today is not one of gloating victory. Instead, it is one of truth, struggle, explanation and apology. And above all else, it is a love letter to a breed that has altered the course of my life and my family’s for almost 30 years. My hope is that other breeders and breeds can learn something from our experience…and perhaps in the telling of the story I will also find some closure.
But fair warning, this is not a short story. To understand where we ended up, we must first go all the way back to the beginning.
It was a long and difficult road to get to that test though – a road littered with regrets, missteps and frustrations. If you had been sitting in our office as the email announcing success was sent you would have seen a glimpse into the heartache of several decades work as my mother instantly dissolved into tears. Anyone who has ever met her will understand that this simply doesn’t happen. Don’t get me wrong, she weeps over every maudlin commercial and sappy YouTube video she sees…but she never actually cries. And yet, as that email went out her entire face crumpled and her shoulders began to shake.
Now, some Manchester people will be rolling their eyes at this point expecting an article singing the praises of the wondrous Kelly crusade for cardiomyopathy. If that’s what you’re looking for though, you’ll need to look elsewhere. This post is NOT intended to in any way take credit for the discovery of the JDCM test. That honour belongs to everyone who took part -- the researchers, the most recent study lead, Michelle Barlak, the breeders and owners, donors and breed clubs.
What it IS about, is working through and sharing my own experiences and feelings. Because the most overwhelming feeling I have looking back on the evolution of the study that eventually cracked the code of this disease is one of sadness and regret. Even as I celebrate the fact that no puppy need die of cardio in our breed ever again, I can’t shake the selfish feeling that I wish I had never gotten involved.
So, my entry today is not one of gloating victory. Instead, it is one of truth, struggle, explanation and apology. And above all else, it is a love letter to a breed that has altered the course of my life and my family’s for almost 30 years. My hope is that other breeders and breeds can learn something from our experience…and perhaps in the telling of the story I will also find some closure.
But fair warning, this is not a short story. To understand where we ended up, we must first go all the way back to the beginning.
Once Upon A Time…
Our family became involved with Toy Manchester Terriers and dog shows purely by accident. My grandparents' dentist lived next door and moonlighted as a breeder whelping litters on behalf of Elsie Puleo of Golden Scoops fame. So, when our old Toy Poodle died in 1984, my Nanna and Pop ducked next door and picked out a puppy for us. My mother says she had the puppy for three days before she even knew what breed he was, but it didn’t matter, he was adorable.
My sisters and I agonized over a name and had worked out a great system for choosing one, we thought. We each wrote our choice down and put the slips of paper in an old white coffee cup with a pink stripe around the rim. Whichever name was drawn would be the winner. I was only six so I don’t remember all of the suggestions, but I do know Brain (from Inspector Gadget) and Cupcake were in the mix. My father was having none of it, however.
“I’m not owning a dog named Cupcake,” he said. “His name is Butch.” And thus our love affair with Toy Manchesters was born.
About a year later my 12-year-old sister bought our second TMT using money she had saved herself. Billy was 9 months old and going on his third home when he came to live with us. Tara had paid less than the gentleman selling him wanted by using one simple strategy: she pestered him to death. By the time she called him for the third time to explain why it was important that he go to a home that would love him, my mother says she thinks he just gave in so she would go away. A neighbour who showed her Schipperke suggested my parents take him to the dog show and voila, showing soon became a family affair. We all competed in Junior Handling, with my sister Jaime even winning Nationals and going to the World Finals at Crufts in the mid-90s.
The next natural step was, of course, to breed a litter. Keeping in mind that this was the mid-1980s and the Internet was but a twinkle in Al Gore’s eye, it will come as no surprise that finding a good bitch wasn’t easy or inexpensive. Then, as today, we lived in a relatively remote place with no show breeders of TMTs within less than a 14 hour drive. Getting into breeding was a huge financial commitment for a young family and, without a mentor, my mother struggled to select the very best lines she could.
She waited for two years for her first bitch, Brandy, to arrive. Athough I was only eight or nine at that point I remember her excitement when her first litter was born. Her hopes were quickly dashed, however, when the vet mistakenly docked the puppies’ tails thinking they were Minpins. Ever persistent, she endeavored to try again the following year. We were going to be allowed to keep one of the four males Brandy and Billy presented that day in 1988, so my sisters and I could have exploded when they were born. Never in the history of mankind had there been more beautiful puppies.
Our family became involved with Toy Manchester Terriers and dog shows purely by accident. My grandparents' dentist lived next door and moonlighted as a breeder whelping litters on behalf of Elsie Puleo of Golden Scoops fame. So, when our old Toy Poodle died in 1984, my Nanna and Pop ducked next door and picked out a puppy for us. My mother says she had the puppy for three days before she even knew what breed he was, but it didn’t matter, he was adorable.
My sisters and I agonized over a name and had worked out a great system for choosing one, we thought. We each wrote our choice down and put the slips of paper in an old white coffee cup with a pink stripe around the rim. Whichever name was drawn would be the winner. I was only six so I don’t remember all of the suggestions, but I do know Brain (from Inspector Gadget) and Cupcake were in the mix. My father was having none of it, however.
“I’m not owning a dog named Cupcake,” he said. “His name is Butch.” And thus our love affair with Toy Manchesters was born.
About a year later my 12-year-old sister bought our second TMT using money she had saved herself. Billy was 9 months old and going on his third home when he came to live with us. Tara had paid less than the gentleman selling him wanted by using one simple strategy: she pestered him to death. By the time she called him for the third time to explain why it was important that he go to a home that would love him, my mother says she thinks he just gave in so she would go away. A neighbour who showed her Schipperke suggested my parents take him to the dog show and voila, showing soon became a family affair. We all competed in Junior Handling, with my sister Jaime even winning Nationals and going to the World Finals at Crufts in the mid-90s.
The next natural step was, of course, to breed a litter. Keeping in mind that this was the mid-1980s and the Internet was but a twinkle in Al Gore’s eye, it will come as no surprise that finding a good bitch wasn’t easy or inexpensive. Then, as today, we lived in a relatively remote place with no show breeders of TMTs within less than a 14 hour drive. Getting into breeding was a huge financial commitment for a young family and, without a mentor, my mother struggled to select the very best lines she could.
She waited for two years for her first bitch, Brandy, to arrive. Athough I was only eight or nine at that point I remember her excitement when her first litter was born. Her hopes were quickly dashed, however, when the vet mistakenly docked the puppies’ tails thinking they were Minpins. Ever persistent, she endeavored to try again the following year. We were going to be allowed to keep one of the four males Brandy and Billy presented that day in 1988, so my sisters and I could have exploded when they were born. Never in the history of mankind had there been more beautiful puppies.
Heartbreak Hotel
Now, you’re probably wondering at this point what any of this has to do with finding a test almost 30 years later. Well, our first experiences with mysterious deaths of young dogs happened at the very beginning of our journey. The first casualty was the young male Mom kept from that second litter. His name was Patch and we were all head over heels in love with him.
When he was five months old, Patch went along for the ride on a weekend trip to an out of town dog show. I remember very clearly that it was my oldest sister’s turn to go away with Mom to the show, so my father took the rest of us to the beach.
I have a vivid memory of my father picking up the old rotary phone at our family’s cottage. His face went very white and he turned away. When he hung up it was time for a serious discussion involving copious tears. But the jumbled memory of a distraught nine-year-old is not helpful, so I asked Mom to describe what happened and here is what she said:
“The first day of the show went well. I have no idea if we won anything, but we had a good time and Tara had fun showing in Junior Handling. She hadn’t been sleeping well the week before, so I remember I made a specific point of getting her into bed early. Of course, the dogs were under the covers like a shot and sound asleep 30 seconds later. Everything seemed fine.
A few hours later, both Tara and I bolted upright in bed at the sound of the most pitiful little scream of pain I had ever heard. Patch, still cuddled under the covers between Tara’s legs, was thrashing wildly around. I dug through the sheets to find him and pulled him up to rest in my lap. He had a bit of foam at the corner of his mouth and his little eyes were quite frantic for a moment. He struggled very weakly one more time without making any sound aside from a quiet gurgle. And then he was gone. 20 seconds…it was that fast.
I panicked and started giving him mouth to mouth and pounding on his little chest, but it was no use. The whole time, Tara just sat there beside me with great big tears in her eyes saying over and over, ‘Please help him, Mom.’ But, of course, I couldn’t do anything at all.”
And there it was. Our first run in with a problem we would later label Juvenile Dialated Cardiomyopathy (JDCM), but which at that moment was a complete mystery and the cause of total heartbreak for our family. Our second case followed just a few weeks later when one of the puppies from the first litter died under similar circumstances.
Now, you’re probably wondering at this point what any of this has to do with finding a test almost 30 years later. Well, our first experiences with mysterious deaths of young dogs happened at the very beginning of our journey. The first casualty was the young male Mom kept from that second litter. His name was Patch and we were all head over heels in love with him.
When he was five months old, Patch went along for the ride on a weekend trip to an out of town dog show. I remember very clearly that it was my oldest sister’s turn to go away with Mom to the show, so my father took the rest of us to the beach.
I have a vivid memory of my father picking up the old rotary phone at our family’s cottage. His face went very white and he turned away. When he hung up it was time for a serious discussion involving copious tears. But the jumbled memory of a distraught nine-year-old is not helpful, so I asked Mom to describe what happened and here is what she said:
“The first day of the show went well. I have no idea if we won anything, but we had a good time and Tara had fun showing in Junior Handling. She hadn’t been sleeping well the week before, so I remember I made a specific point of getting her into bed early. Of course, the dogs were under the covers like a shot and sound asleep 30 seconds later. Everything seemed fine.
A few hours later, both Tara and I bolted upright in bed at the sound of the most pitiful little scream of pain I had ever heard. Patch, still cuddled under the covers between Tara’s legs, was thrashing wildly around. I dug through the sheets to find him and pulled him up to rest in my lap. He had a bit of foam at the corner of his mouth and his little eyes were quite frantic for a moment. He struggled very weakly one more time without making any sound aside from a quiet gurgle. And then he was gone. 20 seconds…it was that fast.
I panicked and started giving him mouth to mouth and pounding on his little chest, but it was no use. The whole time, Tara just sat there beside me with great big tears in her eyes saying over and over, ‘Please help him, Mom.’ But, of course, I couldn’t do anything at all.”
And there it was. Our first run in with a problem we would later label Juvenile Dialated Cardiomyopathy (JDCM), but which at that moment was a complete mystery and the cause of total heartbreak for our family. Our second case followed just a few weeks later when one of the puppies from the first litter died under similar circumstances.
Damn Canadian Water
Those first two cases were alarming and upsetting, but hardly cause for complete panic. Mom called the breeders of the sire and dam and asked questions. They had never heard of anything like it, so she assumed it must be just a fluke or a virus. Our vet recommended just not breeding those two dogs together again. Fair enough!
Following his advice, we undertook an epic 1988 road trip to Ohio that still remains legend in our family (picture two adults, four children and three dogs in an Oldsmobile sedan pulling a utility trailer filled with camping gear…The Griswolds had nothing on us). The adventure yielded a new adult male from completely different lines and a young puppy bitch. We were back in business.
Or were we?
By 1990, our tally of deceased puppies had grown to five. Mom decided to largely cut ties to her original stock, keep only the dogs that hadn’t produced the problem and weren’t related to any of the cases and get a new male. By 1995 we were up to six deceased puppies and by 2000 we were at nine. In addition, we now recognize that we also had an unusually high number of neonatal deaths, having lost 10 puppies during that period in the first week of life. At the time, it seemed like perhaps it was a normal “Toy dog” thing. Necropsies were done on as many dogs as possible, with varying results most of which pointed to some kind of heart problem, but no consistent diagnosis.
Still, no one else had ever heard of it and Mom felt incredibly alone. ‘It must be something in the air or the water up there,’ a breeder in the U.S. said. But cracks in that story were starting to show. Elsie Puleo called one day in 1989 to ask if the bitch she had sold us in Ohio was “OK”. When questioned she wouldn’t say why she was asking, but a few months later she let it slip accidentally that the puppy’s sister had died mysteriously. There was some talk about fatal vaccine reactions and problems with anesthesia…but no one ever seemed to have a necropsy done and nothing was ever discussed in the open.
Mom was dogged in her determination that she was going to beat this. She looked at every possible environmental cause and continued to spay and neuter related dogs, even bringing another new male in from the US in 1992. By the late-1990s I was becoming more active in our breeding program and I urged her to use a wider number of U.S.-based stud dogs from different kennels. All of the breeders indicated they had never had a problem with young dogs dying, so we theorized that if re-starting our breeding program twice hadn’t helped, we could at least attempt to dilute the problem.
A ray of light shone in in 2001 when a breeder in Florida stood up at the American Club’s AGM to say that she too had been losing young dogs. Mom was excited and emboldened by this revelation as she read the account in the minutes publishes in the Club’s newsletter. In 2002, she sent an open letter to breed fanciers through the same newsletter, sharing her experiences and urging others to be vigilant, necropsy puppies they lost and, above all, share information.
Looking back, I am impressed by the bravery it took to write that letter. While some may have read it as a bit too angry or pushy in tone, the words on that page were an expression of 15 years of frustration. 15 years of trying to figure out what she was doing wrong…why her dogs were dying and no one else’s were. 15 years of truly being a Breeder on the Edge and yet somehow continuing to persevere for no other reason than she loved the breed. It was also a cry for help on behalf of the 10 young dogs we had lost by 2002 – a number that would top out at 11 by the time we had our last case of JDCM in 2006.
Those first two cases were alarming and upsetting, but hardly cause for complete panic. Mom called the breeders of the sire and dam and asked questions. They had never heard of anything like it, so she assumed it must be just a fluke or a virus. Our vet recommended just not breeding those two dogs together again. Fair enough!
Following his advice, we undertook an epic 1988 road trip to Ohio that still remains legend in our family (picture two adults, four children and three dogs in an Oldsmobile sedan pulling a utility trailer filled with camping gear…The Griswolds had nothing on us). The adventure yielded a new adult male from completely different lines and a young puppy bitch. We were back in business.
Or were we?
By 1990, our tally of deceased puppies had grown to five. Mom decided to largely cut ties to her original stock, keep only the dogs that hadn’t produced the problem and weren’t related to any of the cases and get a new male. By 1995 we were up to six deceased puppies and by 2000 we were at nine. In addition, we now recognize that we also had an unusually high number of neonatal deaths, having lost 10 puppies during that period in the first week of life. At the time, it seemed like perhaps it was a normal “Toy dog” thing. Necropsies were done on as many dogs as possible, with varying results most of which pointed to some kind of heart problem, but no consistent diagnosis.
Still, no one else had ever heard of it and Mom felt incredibly alone. ‘It must be something in the air or the water up there,’ a breeder in the U.S. said. But cracks in that story were starting to show. Elsie Puleo called one day in 1989 to ask if the bitch she had sold us in Ohio was “OK”. When questioned she wouldn’t say why she was asking, but a few months later she let it slip accidentally that the puppy’s sister had died mysteriously. There was some talk about fatal vaccine reactions and problems with anesthesia…but no one ever seemed to have a necropsy done and nothing was ever discussed in the open.
Mom was dogged in her determination that she was going to beat this. She looked at every possible environmental cause and continued to spay and neuter related dogs, even bringing another new male in from the US in 1992. By the late-1990s I was becoming more active in our breeding program and I urged her to use a wider number of U.S.-based stud dogs from different kennels. All of the breeders indicated they had never had a problem with young dogs dying, so we theorized that if re-starting our breeding program twice hadn’t helped, we could at least attempt to dilute the problem.
A ray of light shone in in 2001 when a breeder in Florida stood up at the American Club’s AGM to say that she too had been losing young dogs. Mom was excited and emboldened by this revelation as she read the account in the minutes publishes in the Club’s newsletter. In 2002, she sent an open letter to breed fanciers through the same newsletter, sharing her experiences and urging others to be vigilant, necropsy puppies they lost and, above all, share information.
Looking back, I am impressed by the bravery it took to write that letter. While some may have read it as a bit too angry or pushy in tone, the words on that page were an expression of 15 years of frustration. 15 years of trying to figure out what she was doing wrong…why her dogs were dying and no one else’s were. 15 years of truly being a Breeder on the Edge and yet somehow continuing to persevere for no other reason than she loved the breed. It was also a cry for help on behalf of the 10 young dogs we had lost by 2002 – a number that would top out at 11 by the time we had our last case of JDCM in 2006.
Faces
I’m going to stop here for a moment because I want to underline something very important. For most of those reading this entry, “11” is simply a number. A digit. A statistic. For us, they were real puppies.
Growing up, having puppies was normal life for my sisters and me. We regularly dragged them around the neighbourhood and dressing them in doll clothes or painting their toenails was one of my favourite pastimes. We even had an elaborate wedding ceremony for one expectant mother and her reluctant groom. The pink wedding dress was “crafted” from one of Mom’s old nightgowns and my father tied a Windsor knot for the male. My sister played the flute as they walked down the aisle while my cousin officiated. The dog food wedding cake we created was divine (as were the human cookies). Truly a touching event. And, of course, we named every single puppy ever born – my favourite being our litter named after WWF wrestlers. Because who doesn’t want a wrestling TMT?
The people who took those puppies home loved them every bit as much as we did. Some of the puppies lost were as young as 3, 4 or 5 months old while others made it to 10 or 11 months. Each call reporting their death was equally difficult for everyone involved. One gentleman briefly revived his puppy in the middle of the night with the air hose from the fish tank as his young children looked on. Another puppy died after a busy day playing at the beach with her family. I was in grade nine and one of the sons in that family was in my class. He never spoke to me again.
Once a study officially began in 2006, our circle of heartbreak grew as we shared in the grief of other breeders and owners. One owner called crying in the middle of the night on New Year’s Eve one year. A sobbing college student from Michigan was heartsick when her 7-month-old puppy died in her bed. All of those owners and the caring breeders who graciously shared their losses did so with the hope that we would soon develop a test.
I’m going to stop here for a moment because I want to underline something very important. For most of those reading this entry, “11” is simply a number. A digit. A statistic. For us, they were real puppies.
Growing up, having puppies was normal life for my sisters and me. We regularly dragged them around the neighbourhood and dressing them in doll clothes or painting their toenails was one of my favourite pastimes. We even had an elaborate wedding ceremony for one expectant mother and her reluctant groom. The pink wedding dress was “crafted” from one of Mom’s old nightgowns and my father tied a Windsor knot for the male. My sister played the flute as they walked down the aisle while my cousin officiated. The dog food wedding cake we created was divine (as were the human cookies). Truly a touching event. And, of course, we named every single puppy ever born – my favourite being our litter named after WWF wrestlers. Because who doesn’t want a wrestling TMT?
The people who took those puppies home loved them every bit as much as we did. Some of the puppies lost were as young as 3, 4 or 5 months old while others made it to 10 or 11 months. Each call reporting their death was equally difficult for everyone involved. One gentleman briefly revived his puppy in the middle of the night with the air hose from the fish tank as his young children looked on. Another puppy died after a busy day playing at the beach with her family. I was in grade nine and one of the sons in that family was in my class. He never spoke to me again.
Once a study officially began in 2006, our circle of heartbreak grew as we shared in the grief of other breeders and owners. One owner called crying in the middle of the night on New Year’s Eve one year. A sobbing college student from Michigan was heartsick when her 7-month-old puppy died in her bed. All of those owners and the caring breeders who graciously shared their losses did so with the hope that we would soon develop a test.
But I digress. My point is that each and every one of those dogs and those families was real to us. They weren’t Sample A and Sample B, they were Patch, George, Silas and Lulu. Their families experienced the same feelings my family did so many years ago. Panic at not being able to do anything to help a puppy struggling to breath. Sadness and grief at the loss of a well-loved family member. And for breeders, anger and frustration at not knowing where to go or what to do next.
So, if I accomplish nothing else in this long diatribe today, I hope I can at least provide some explanation for the passionate, stubborn and even aggressive face many saw. Certainly we were frustrated…but above all, we were empathetic. Until her dying day my mother will never forget trying to save poor Patch. Preventing anyone else from having to go through that became a driving force equaled down the road only by the desire to prove that we were right (an admittedly dangerous ingredient).
So-Called Scientific Evidence
But let’s get back to our story. Where were we? Oh yes – 11 dead puppies. Now, you might be thinking to yourself that 11 puppies doesn’t sound like very much, and perhaps you’re right. As one breeder said to me once, sometimes dogs just die and you have to deal with that if you want to breed dogs. But let me provide a little bit of perspective here: those 11 puppies represented fully 10% of all of the Toy Manchester puppies we produced across that almost 20 year period. 10%. By comparison, we had had just two cases of Legges-Calves-Perthes Disease, which many breeders pointed to as the breed’s biggest problem and which most were all too willing to acknowledge and discuss.
The parents of those litters included 12 dogs from seven different breeders. And yet, no one else was having a problem. How could that possibly be, we thought. We got our dogs from somewhere. We weren’t sequencing the canine genome in our basement!
To say that our frustration was mounting would be putting it mildly. As our casualty list grew, we became increasingly paralyzed with fear. Trying to figure out which breedings might be ‘safe’ became an obsession as we floundered about trying to avoid producing any more deaths. Still, everything remained relatively even-keeled until the early-2000s when the final straw would break the back of our very weary camel.
As I alluded to previously, as the new century dawned we were adopting a new approach of more assortative matings. Watching JDCM move through generations of our own dogs it was absolutely crystal clear to me that the problem was genetic, but getting rid of everything that produced cardio didn’t seem to be working. Every new dog and line seemed to carry it. Instead we were going to try to track where we were seeing it, share that information with fellow breeders and attempt to eliminate the gene(s) or at the very least dilute them. It was difficult because of our remoteness, but we were game. We were particularly excited to have found a breeder with what we thought were some of the most beautiful Toy Manchesters around. They assured us they had never had any heart problems or young dog deaths so we undertook several breedings, even going so far as to pay to vWD test their males.
The resulting puppies were absolutely beautiful. Four breedings took place across a few years to three different males. We lost two puppies. Still, they swore they had never lost another puppy so we began to question ourselves again. Was it really something in the air or water up here? Was it related to the lengths of our winters and the resulting effect on hormones? Was it an autoimmune problem? We looked at everything. Read everything we could get our hands on. Trusted that they were telling the truth.
But then chinks in the armor began to appear. At just over 20 years old and struggling to pay for University, I worked a second job to save enough money to buy my very first puppy from these lovely people with the beautiful dogs. It died on the drive home. My poor mother found herself once again away from home holding a dead puppy in her arms…this time in a Wal-Mart parking lot. They were kind but unconcerned. No, a necropsy wasn’t necessary.
We should have cut our losses then, but no one wanted to breed to these beautiful dogs more than we did so we tried one last time. Breeding a brand new bitch to a stunning male we had used before, we lost another puppy. A friend lost one out of the same male around the same time. One male, three bitches, three dead puppies.
We were distraught. Telephone discussions yielded nothing but the same insistence that it was only a problem our dogs had. So, gathering up all of the necropsies we had done on the puppies we lost, we sent an email begging these breeders we still liked so much to at least retire the dog who had produced the three dead puppies from their busy breeding program. Their response to our private entreaty was vicious and very public. We were vilified as “those characters from eastern Canada” on their website.
The information we shared was dismissed as “so-called scientific evidence.” It wasn’t pretty. Needless to say, our collaborations came to an end and one more layer of frustration and anger with lack of openness in our breed was added to our growing wall.
So, if I accomplish nothing else in this long diatribe today, I hope I can at least provide some explanation for the passionate, stubborn and even aggressive face many saw. Certainly we were frustrated…but above all, we were empathetic. Until her dying day my mother will never forget trying to save poor Patch. Preventing anyone else from having to go through that became a driving force equaled down the road only by the desire to prove that we were right (an admittedly dangerous ingredient).
So-Called Scientific Evidence
But let’s get back to our story. Where were we? Oh yes – 11 dead puppies. Now, you might be thinking to yourself that 11 puppies doesn’t sound like very much, and perhaps you’re right. As one breeder said to me once, sometimes dogs just die and you have to deal with that if you want to breed dogs. But let me provide a little bit of perspective here: those 11 puppies represented fully 10% of all of the Toy Manchester puppies we produced across that almost 20 year period. 10%. By comparison, we had had just two cases of Legges-Calves-Perthes Disease, which many breeders pointed to as the breed’s biggest problem and which most were all too willing to acknowledge and discuss.
The parents of those litters included 12 dogs from seven different breeders. And yet, no one else was having a problem. How could that possibly be, we thought. We got our dogs from somewhere. We weren’t sequencing the canine genome in our basement!
To say that our frustration was mounting would be putting it mildly. As our casualty list grew, we became increasingly paralyzed with fear. Trying to figure out which breedings might be ‘safe’ became an obsession as we floundered about trying to avoid producing any more deaths. Still, everything remained relatively even-keeled until the early-2000s when the final straw would break the back of our very weary camel.
As I alluded to previously, as the new century dawned we were adopting a new approach of more assortative matings. Watching JDCM move through generations of our own dogs it was absolutely crystal clear to me that the problem was genetic, but getting rid of everything that produced cardio didn’t seem to be working. Every new dog and line seemed to carry it. Instead we were going to try to track where we were seeing it, share that information with fellow breeders and attempt to eliminate the gene(s) or at the very least dilute them. It was difficult because of our remoteness, but we were game. We were particularly excited to have found a breeder with what we thought were some of the most beautiful Toy Manchesters around. They assured us they had never had any heart problems or young dog deaths so we undertook several breedings, even going so far as to pay to vWD test their males.
The resulting puppies were absolutely beautiful. Four breedings took place across a few years to three different males. We lost two puppies. Still, they swore they had never lost another puppy so we began to question ourselves again. Was it really something in the air or water up here? Was it related to the lengths of our winters and the resulting effect on hormones? Was it an autoimmune problem? We looked at everything. Read everything we could get our hands on. Trusted that they were telling the truth.
But then chinks in the armor began to appear. At just over 20 years old and struggling to pay for University, I worked a second job to save enough money to buy my very first puppy from these lovely people with the beautiful dogs. It died on the drive home. My poor mother found herself once again away from home holding a dead puppy in her arms…this time in a Wal-Mart parking lot. They were kind but unconcerned. No, a necropsy wasn’t necessary.
We should have cut our losses then, but no one wanted to breed to these beautiful dogs more than we did so we tried one last time. Breeding a brand new bitch to a stunning male we had used before, we lost another puppy. A friend lost one out of the same male around the same time. One male, three bitches, three dead puppies.
We were distraught. Telephone discussions yielded nothing but the same insistence that it was only a problem our dogs had. So, gathering up all of the necropsies we had done on the puppies we lost, we sent an email begging these breeders we still liked so much to at least retire the dog who had produced the three dead puppies from their busy breeding program. Their response to our private entreaty was vicious and very public. We were vilified as “those characters from eastern Canada” on their website.
The information we shared was dismissed as “so-called scientific evidence.” It wasn’t pretty. Needless to say, our collaborations came to an end and one more layer of frustration and anger with lack of openness in our breed was added to our growing wall.
Enter Our Saviours
It was around this time that we had the great fortune to begin working with a wonderful team at the University of Prince Edward Island. Whether it was purely scientific advancements that allowed them to see things more clearly or the growing body of evidence showing something strange was happening, Dr. Etienne Coté and Dr. Shannon Martinson took an interest that soon grew into a full-blown study as they attempted to figure out exactly what was happening to these young dogs.
The mechanics of that study are quite well documented on the Canadian Manchester Terrier Club website. I urge those interested to read about the course their inquiry took as they tried to explain the mechanics of the disease process in an attempt to determine its cause and, hopefully, potential ways to test for it. Dr. Coté and Dr. Martinson covered many of the costs for testing out of their own research budget while the Canadian and American Manchester Terrier Clubs contributed additional funds. The CMTC in particular shouldered a large portion of the financial cost and should be commended for their support and advocacy.
As time went on, the circle of help grew with genetic samples stored for free by Dr. Paula Henthorn at the University of Pennsylvannia, a pedigree analysis completed by Dr. Liz Hare using funds raised in our very first major breed fundraising campaign, and in 2015 Dr. Eva Furrow and the team at the University of Minnesota lead the charge to identify the gene responsible.
Without getting into too much detail about how things worked, it essentially went like this:
Looking at it in a simple list like this, the whole thing looks pretty straight forward and easy. What you don’t see on the list though was our constant struggle for ‘more’. We needed more new samples from affected puppies to figure out what was going on. We needed to test more producers to try to find a physical test. We needed more samples from affected puppies to even attempt finding the gene. And we always needed more money to keep going. As we searched for more with great difficulty, one question kept floating to the surface: If this is really a problem in your breed, why aren’t there more cases being reported?
It was around this time that we had the great fortune to begin working with a wonderful team at the University of Prince Edward Island. Whether it was purely scientific advancements that allowed them to see things more clearly or the growing body of evidence showing something strange was happening, Dr. Etienne Coté and Dr. Shannon Martinson took an interest that soon grew into a full-blown study as they attempted to figure out exactly what was happening to these young dogs.
The mechanics of that study are quite well documented on the Canadian Manchester Terrier Club website. I urge those interested to read about the course their inquiry took as they tried to explain the mechanics of the disease process in an attempt to determine its cause and, hopefully, potential ways to test for it. Dr. Coté and Dr. Martinson covered many of the costs for testing out of their own research budget while the Canadian and American Manchester Terrier Clubs contributed additional funds. The CMTC in particular shouldered a large portion of the financial cost and should be commended for their support and advocacy.
As time went on, the circle of help grew with genetic samples stored for free by Dr. Paula Henthorn at the University of Pennsylvannia, a pedigree analysis completed by Dr. Liz Hare using funds raised in our very first major breed fundraising campaign, and in 2015 Dr. Eva Furrow and the team at the University of Minnesota lead the charge to identify the gene responsible.
Without getting into too much detail about how things worked, it essentially went like this:
- 2005-2007: The team at UPEI described what was happening. It was at this point that the team determined that this was a new and unique form of cardiomyopathy that had not been seen in dogs before.
- 2007-2009: Dr. Coté tested dogs that had produced cardio puppies in an attempt to determine if they showed any physical signs that might allow us to screen for carriers.
- 2010: Dr. Hare analyzed all of the pedigrees to determine if a genetic link was probable and what the inheritance pattern might look like.
- 2012: Dr. Coté continued to study producers to try to identify a physical test like a holter monitor, doppler or an EKG that could identify carriers.
- 2013: A peer-reviewed paper on the disease was published in the Journal of Veterinary Pathology.
- 2016: Dr. Furrow identified the mutation responsible and released a test.
Looking at it in a simple list like this, the whole thing looks pretty straight forward and easy. What you don’t see on the list though was our constant struggle for ‘more’. We needed more new samples from affected puppies to figure out what was going on. We needed to test more producers to try to find a physical test. We needed more samples from affected puppies to even attempt finding the gene. And we always needed more money to keep going. As we searched for more with great difficulty, one question kept floating to the surface: If this is really a problem in your breed, why aren’t there more cases being reported?
Anxiety Builds
And just like that the old self-doubt started to creep back in. Maybe it is just us. Maybe no one else is having this problem. Maybe we’re the problem and we just need to stop breeding.
These doubts were continually reinforced by the constant push back from some members of the breed community. When we first had dying puppies, there was no disease. When the disease was officially characterized, there was a disease but it wasn’t genetic. When the geneticist said it was probably a simple recessive, the geneticist was probably wrong.
Among those who recognized the threat a new demand emerged – the quest for information. Where is cardio appearing, everyone wanted to know. I want to avoid it so you need to tell me. And OHHH how I wanted to. Sitting back and watching people breed from dogs I knew had produced cardio all the while knowing that the breeder of their dog had surely never told them a thing was almost the end of me. Truly. Is this, I wondered, what cardio in Dobermans looked like when it started out? Am I standing silently by and letting this gene spread through our population? If we had campaigned to get rid of all of the producers we knew of back in the late-90s and early 2000s, would we have been smarter?
My own constant second guessing of every move and every decision was agonizing. I always shared information on our own cases and occasionally on a handful of cases the owners had given me permission to share information on, but beyond that I could say nothing. Attempts at subtly helping were rebuffed and sometimes blew up in my face. I estimated risk in pedigrees when asked, but I simply didn’t know the answer all the time. There were cases submitted that I never knew anything about because they went straight to the team at UPEI (which was marvelous!).
Still, I never knew if we were doing the right thing. Every decision seemed like the wrong one. A prime example came mid-way through Dr. Coté’s work when a wealthy businessman who had taken an interest in breed health contacted me offering to underwrite the study and find the gene. The only requirement was that we essentially take the work away from Dr. Coté and his team and move it to another University. I didn’t know what to do. These researchers had invested years of work and real research dollars. They had proven a resource we could depend on. I tried to negotiate a compromise that would allow everyone to work together and was devastated when it didn’t work out and the businessman walked away. I thought for sure I had killed the study’s chances completely and cried for a solid two weeks.
And just like that the old self-doubt started to creep back in. Maybe it is just us. Maybe no one else is having this problem. Maybe we’re the problem and we just need to stop breeding.
These doubts were continually reinforced by the constant push back from some members of the breed community. When we first had dying puppies, there was no disease. When the disease was officially characterized, there was a disease but it wasn’t genetic. When the geneticist said it was probably a simple recessive, the geneticist was probably wrong.
Among those who recognized the threat a new demand emerged – the quest for information. Where is cardio appearing, everyone wanted to know. I want to avoid it so you need to tell me. And OHHH how I wanted to. Sitting back and watching people breed from dogs I knew had produced cardio all the while knowing that the breeder of their dog had surely never told them a thing was almost the end of me. Truly. Is this, I wondered, what cardio in Dobermans looked like when it started out? Am I standing silently by and letting this gene spread through our population? If we had campaigned to get rid of all of the producers we knew of back in the late-90s and early 2000s, would we have been smarter?
My own constant second guessing of every move and every decision was agonizing. I always shared information on our own cases and occasionally on a handful of cases the owners had given me permission to share information on, but beyond that I could say nothing. Attempts at subtly helping were rebuffed and sometimes blew up in my face. I estimated risk in pedigrees when asked, but I simply didn’t know the answer all the time. There were cases submitted that I never knew anything about because they went straight to the team at UPEI (which was marvelous!).
Still, I never knew if we were doing the right thing. Every decision seemed like the wrong one. A prime example came mid-way through Dr. Coté’s work when a wealthy businessman who had taken an interest in breed health contacted me offering to underwrite the study and find the gene. The only requirement was that we essentially take the work away from Dr. Coté and his team and move it to another University. I didn’t know what to do. These researchers had invested years of work and real research dollars. They had proven a resource we could depend on. I tried to negotiate a compromise that would allow everyone to work together and was devastated when it didn’t work out and the businessman walked away. I thought for sure I had killed the study’s chances completely and cried for a solid two weeks.
Regrets…I’ve Had A Few…
The pressure to find more cases and more samples to support the research -- to justify its very existence -- became overwhelming and my inner resolve started to crumble. As time went by I would hear about this person or that person with a deceased puppy. At first I left it alone. If they wanted to share information, they knew where to find us. Funds were available to help pay for necropsies, so money wasn’t an excuse and contact information for the team at UPEI could be found easily, so confidentiality shouldn’t have been an issue (even though no one in dogs ever believes anything is confidential – a constant source of frustration for the professional researchers who live and die by it).
As the number of rumored young dead TMTs grew, however, so did my own anger and frustration. Why couldn’t people see that we needed their help to find a test, I kept asking myself. My ability to deal with resistance was slowly worn away. Explaining why to those who have never faced a wall of opposition is difficult. When I initially wrote this article I listed out in detail some of the examples, but as I edited and re-edited (and re-edited) in an attempt to find the right way to tell this story it occurred to me that re-hashing the finer details was pointless. Suffice it to say it was difficult.
We had breeders who not only chose to not take part themselves, but actively discouraged others from sharing information or DNA samples with the study. One breeder put her necropsy report through the shredder rather than share it. Another told his pet owner their money wouldn’t be refunded if they provided a pedigree for the puppy whose necropsy had confirmed cardio. A fellow fancier had a necropsy done and contacted me secretly to say it had shown cancer but she had been threatened by the breeder with reprisals if she contacted the study. There was even a lawsuit at one point.
Several breeders refused to accept the lead pathologist’s conclusion that their puppies had died of cardiomyopathy. On its face it shouldn’t have mattered. The information was offered, they could do with it what they wanted, but I was frustrated. After years of being told we were wrong, as evidence began to mount that a real problem existed I found I increasingly needed other people to recognize what was happening.
And that, at the end of the day, was my true weakness. After so many years of feeling alone, being told our dead puppies were our problem only, we wanted validation. And the need for that validation and the complete cooperation I felt the study should have engendered made me insistent. When a fellow breeder lost a young dog with some ties to dogs in my own breeding program, I asked questions. I should have accepted the fact that a necropsy hadn’t been done so no conclusions could be drawn, but I couldn’t. In the heat of the moment I was not only frustrated because funds were available to help and DNA samples were so desperately needed – I was terrified. We had, we thought, finally gotten clear of producers in our pedigrees and here was a brand new, unknown threat on our doorstep. I couldn’t face cardio puppy #12. I pushed too hard, which wasn’t fair to the other breeder or to the study.
Everything came to a head as 2012 came to a close. With publication of the paper in the Journal of Veterinary Pathology on the horizon, we were out of moves. The study team had exhausted every avenue looking for a physical test to help us screen dogs and we didn’t have anywhere near enough samples from affected puppies to look for a genetic test. It looked like the study was coming to a close and we had nothing. No test, no next steps…no way forward.
The one and only remaining lead to follow was investigation of a particular heart rhythm that had the tiniest chance of possibly indicating that a dog was a carrier. So tiny, even the cardiologist didn’t think it had a chance (and he was right!). To test the theory, we needed to identify a new cardio producer because all of our own were too old. When one finally came along, I was desperate to get a holter monitor on him before everything dried up and blew away, leaving us with a disease diagnosis and no way to test for it. I begged the owner to allow us to do the test because it truly looked like the end of the line. Again, I pushed too hard.
It is interactions like those above that I regret the most. I truly hope those working on similar projects with be able to learn from them. Regardless of what frustration I was feeling, my first job was to be kind, caring and understanding as people moved through their own journeys. They didn’t have 11 dead puppies, they just had one. And while I’m sure there are many instances when I was successful, when I look back over the past 11 years those aren’t the stories that stand out in my mind.
So, to those people, I sincerely apologize. Now, I certainly don’t intend to fall on my sword here. Apologizing doesn't mean I agree with their decisions, but this apology isn't about them, it's about me. My place was to support, not to judge or pressure and I wish I could rewind time to remind myself of that.
The pressure to find more cases and more samples to support the research -- to justify its very existence -- became overwhelming and my inner resolve started to crumble. As time went by I would hear about this person or that person with a deceased puppy. At first I left it alone. If they wanted to share information, they knew where to find us. Funds were available to help pay for necropsies, so money wasn’t an excuse and contact information for the team at UPEI could be found easily, so confidentiality shouldn’t have been an issue (even though no one in dogs ever believes anything is confidential – a constant source of frustration for the professional researchers who live and die by it).
As the number of rumored young dead TMTs grew, however, so did my own anger and frustration. Why couldn’t people see that we needed their help to find a test, I kept asking myself. My ability to deal with resistance was slowly worn away. Explaining why to those who have never faced a wall of opposition is difficult. When I initially wrote this article I listed out in detail some of the examples, but as I edited and re-edited (and re-edited) in an attempt to find the right way to tell this story it occurred to me that re-hashing the finer details was pointless. Suffice it to say it was difficult.
We had breeders who not only chose to not take part themselves, but actively discouraged others from sharing information or DNA samples with the study. One breeder put her necropsy report through the shredder rather than share it. Another told his pet owner their money wouldn’t be refunded if they provided a pedigree for the puppy whose necropsy had confirmed cardio. A fellow fancier had a necropsy done and contacted me secretly to say it had shown cancer but she had been threatened by the breeder with reprisals if she contacted the study. There was even a lawsuit at one point.
Several breeders refused to accept the lead pathologist’s conclusion that their puppies had died of cardiomyopathy. On its face it shouldn’t have mattered. The information was offered, they could do with it what they wanted, but I was frustrated. After years of being told we were wrong, as evidence began to mount that a real problem existed I found I increasingly needed other people to recognize what was happening.
And that, at the end of the day, was my true weakness. After so many years of feeling alone, being told our dead puppies were our problem only, we wanted validation. And the need for that validation and the complete cooperation I felt the study should have engendered made me insistent. When a fellow breeder lost a young dog with some ties to dogs in my own breeding program, I asked questions. I should have accepted the fact that a necropsy hadn’t been done so no conclusions could be drawn, but I couldn’t. In the heat of the moment I was not only frustrated because funds were available to help and DNA samples were so desperately needed – I was terrified. We had, we thought, finally gotten clear of producers in our pedigrees and here was a brand new, unknown threat on our doorstep. I couldn’t face cardio puppy #12. I pushed too hard, which wasn’t fair to the other breeder or to the study.
Everything came to a head as 2012 came to a close. With publication of the paper in the Journal of Veterinary Pathology on the horizon, we were out of moves. The study team had exhausted every avenue looking for a physical test to help us screen dogs and we didn’t have anywhere near enough samples from affected puppies to look for a genetic test. It looked like the study was coming to a close and we had nothing. No test, no next steps…no way forward.
The one and only remaining lead to follow was investigation of a particular heart rhythm that had the tiniest chance of possibly indicating that a dog was a carrier. So tiny, even the cardiologist didn’t think it had a chance (and he was right!). To test the theory, we needed to identify a new cardio producer because all of our own were too old. When one finally came along, I was desperate to get a holter monitor on him before everything dried up and blew away, leaving us with a disease diagnosis and no way to test for it. I begged the owner to allow us to do the test because it truly looked like the end of the line. Again, I pushed too hard.
It is interactions like those above that I regret the most. I truly hope those working on similar projects with be able to learn from them. Regardless of what frustration I was feeling, my first job was to be kind, caring and understanding as people moved through their own journeys. They didn’t have 11 dead puppies, they just had one. And while I’m sure there are many instances when I was successful, when I look back over the past 11 years those aren’t the stories that stand out in my mind.
So, to those people, I sincerely apologize. Now, I certainly don’t intend to fall on my sword here. Apologizing doesn't mean I agree with their decisions, but this apology isn't about them, it's about me. My place was to support, not to judge or pressure and I wish I could rewind time to remind myself of that.
Wicked Witch of the East
As 2013 dawned, I came to recognize that I had burned too many bridges. Now, I could explain and justify it all by saying that convincing a group of people that there is a problem they do not wish to acknowledge requires saying some unpopular things and making people look closely at their own choices to help or hinder efforts to address it. I could also say that I was burned out and feeling alone. Despite the ongoing help of some absolutely wonderful people and fellow breeders, the day-to-day grind fell on me. Constantly pushing to move things forward. Always trying to raise more money or coordinate the next step. I was tired.
I could say all of those things, and they would be true to a large extent, but I also have to take ownership of the fact that my own approach led to the situation that ultimately dictated my exit as study lead. It came with the realization that in the span of only a few months a friend had been contacted about 10 puppies who died very young…and I hadn’t heard about a single one.
So, I stepped back and the second savior in our story appeared. Previous pleas for help had yielded no substantive assistance in leading study efforts, but in 2012 Michelle Barlak raised her hand. Michelle could be and was everything I couldn’t be. She was unimpeded by years of built up frustration. She could look at the situation with fresh eyes and an open heart, which is exactly what was needed. And, of course, it helped that she is extremely smart and talented.
Michelle graciously allowed me to continue to assist behind the scenes. To this day, I am grateful for the friendship that grew from the opportunity to work with her and the wisdom that came from watching her work. But I can’t speak to Michelle’s experiences as study lead, so I’ll end my own story here with thanks to her that I think are echoed by everyone in our breed.
Lessons Learned
The rest, as they say, is history. In the end, scientific advancement allowing DNA to be pulled from old necropsies is what put us over the top in gathering enough samples from affected puppies to find a genetic test. Even after Michelle took over, the number of actual samples submitted to the study remained extremely low. It could be an indication that just not that many puppies were dying. It could also be a reflection of the breed’s low birthrate, the challenges of a very dispersed population, difficulties getting necropsies done if owners don’t report until after a puppy is buried, or financial challenges for breeders who aren’t able or willing to pay for them.
Even if I do now understand all of those factors more, I still struggle to forgive those who wantonly chose to conceal information for whatever reason. I question how their own reputation can be more important to them than the lives of the wee little puppies they are breeding or how they can profess to love a breed but be unwilling to make any personal sacrifice on its behalf. I also question how they could hate me so viscerally. How they could look at the years of blood, sweat and tears invested and not see the love that underlined it. But I am sure that they also struggle to forgive me, so it’s a two-way street and I can only hope that one day we will be able to meet in the middle.
Most of all, if I'm being 100% honest, I struggle to enjoy the fact that the test is now available. Obviously, on a cerebral level I’m thrilled. It is, after all, what we were working toward for all of those years. But somewhere along the way I lost something important in myself – an ability to see the best in people. Mom and I have been accused of lying, threatening people, spreading malicious rumors and even of stealing a dog (!) because of situations related to or anger stemming from the study. As a result, as I sit here looking back I really and truly have to say that I wish I had never gotten involved. Even if that meant we didn’t have a test today. Even if it meant we were no longer breeding. The personal cost was, for me, too high. Hopefully, one day I will feel differently.
In the meantime, I want to offer the following small pieces of advice to breeders in breeds facing similar health concerns or involved in similar studies in pursuit of a test:
Looking Forward
Now, the foregoing story will likely seem very negative, but I wanted to share my own thoughts and feelings looking back as honestly as I can. I would be wrong though to not acknowledge that while there were many missteps on the journey to this cardio test, a lot of things went right too – and a lot of people did step up to get us there.
This is the story of a small breed that made things happen. WE did this. There is a list of people deserving thanks that is as long as my arm. Michelle, Jim & Pat, Blossom, Carolyn…thank you. Owners and breeders of puppies who took part, donors from around the world and particularly the American and Canadian Manchester Terrier Clubs…thank you.
Mom…I love you. Thank you for being brave, persistent and honest. For not allow me to crack up or melt down. And for setting an example I continue to aspire to by fighting harder when so many would have given up. You are the original Breeder on the Edge, and you have proven that there is always a way to avoid falling off the cliff.
And so I will end not with negativity, but with hope. Our researchers went above and beyond over and over again. Clubs and individuals supported the study financially in ways we have never seen before in our breed. Many breeders and owners did bravely share their stories and make their dogs available for testing and study. And last year, breed lovers came together to raise more money than has ever been raised for any initiative in our history.
For those reasons, we have much more than just a test to celebrate.
Post Script: I struggled with this month’s post. It is probably one of the most difficult things I have ever written because it required a level of self-reflection, honesty and vulnerability that was uncomfortable, at best. In fact, I wrote it many weeks ago and haven’t been able to bring myself to publish it until now. I may not have ever shared it but for one realization: Breeders all over the world are facing problems and situations like this in their own breeding programs every day – and they too feel alone. Hopefully this makes them feel a little less so.
As 2013 dawned, I came to recognize that I had burned too many bridges. Now, I could explain and justify it all by saying that convincing a group of people that there is a problem they do not wish to acknowledge requires saying some unpopular things and making people look closely at their own choices to help or hinder efforts to address it. I could also say that I was burned out and feeling alone. Despite the ongoing help of some absolutely wonderful people and fellow breeders, the day-to-day grind fell on me. Constantly pushing to move things forward. Always trying to raise more money or coordinate the next step. I was tired.
I could say all of those things, and they would be true to a large extent, but I also have to take ownership of the fact that my own approach led to the situation that ultimately dictated my exit as study lead. It came with the realization that in the span of only a few months a friend had been contacted about 10 puppies who died very young…and I hadn’t heard about a single one.
So, I stepped back and the second savior in our story appeared. Previous pleas for help had yielded no substantive assistance in leading study efforts, but in 2012 Michelle Barlak raised her hand. Michelle could be and was everything I couldn’t be. She was unimpeded by years of built up frustration. She could look at the situation with fresh eyes and an open heart, which is exactly what was needed. And, of course, it helped that she is extremely smart and talented.
Michelle graciously allowed me to continue to assist behind the scenes. To this day, I am grateful for the friendship that grew from the opportunity to work with her and the wisdom that came from watching her work. But I can’t speak to Michelle’s experiences as study lead, so I’ll end my own story here with thanks to her that I think are echoed by everyone in our breed.
Lessons Learned
The rest, as they say, is history. In the end, scientific advancement allowing DNA to be pulled from old necropsies is what put us over the top in gathering enough samples from affected puppies to find a genetic test. Even after Michelle took over, the number of actual samples submitted to the study remained extremely low. It could be an indication that just not that many puppies were dying. It could also be a reflection of the breed’s low birthrate, the challenges of a very dispersed population, difficulties getting necropsies done if owners don’t report until after a puppy is buried, or financial challenges for breeders who aren’t able or willing to pay for them.
Even if I do now understand all of those factors more, I still struggle to forgive those who wantonly chose to conceal information for whatever reason. I question how their own reputation can be more important to them than the lives of the wee little puppies they are breeding or how they can profess to love a breed but be unwilling to make any personal sacrifice on its behalf. I also question how they could hate me so viscerally. How they could look at the years of blood, sweat and tears invested and not see the love that underlined it. But I am sure that they also struggle to forgive me, so it’s a two-way street and I can only hope that one day we will be able to meet in the middle.
Most of all, if I'm being 100% honest, I struggle to enjoy the fact that the test is now available. Obviously, on a cerebral level I’m thrilled. It is, after all, what we were working toward for all of those years. But somewhere along the way I lost something important in myself – an ability to see the best in people. Mom and I have been accused of lying, threatening people, spreading malicious rumors and even of stealing a dog (!) because of situations related to or anger stemming from the study. As a result, as I sit here looking back I really and truly have to say that I wish I had never gotten involved. Even if that meant we didn’t have a test today. Even if it meant we were no longer breeding. The personal cost was, for me, too high. Hopefully, one day I will feel differently.
In the meantime, I want to offer the following small pieces of advice to breeders in breeds facing similar health concerns or involved in similar studies in pursuit of a test:
- Make a pledge right now to always understand that the presence of any health issue in any individual dog or line is not the result of a personal failing among any of the people involved. We said this a million times and it is still true: all of us are doing our best. No one sets out thinking “Gee, I really hope we get health issue XYZ in this litter.”
- Having a problem is often out of our control, but what we do once we have had one is the true measure of a responsible breeder. Let your decisions be guided by your ability to look yourself in the eye as you stand at your bathroom mirror every morning.
- Remember that discovering a problem in a breeding program, particularly a fatal problem, is a process. It’s actually not unlike the 5 stages of grief: denial, anger, bargaining, depression and acceptance. Everyone involved needs time and space to deal with those things. While it may seem like getting the test done or securing the sample is the most important thing in the world, it’s not worth it if it means those involved are alienated, because next time they won’t come calling and they’ll surely share their negative experience with their friends.
- Don’t allow the burden of any major activity to predominantly fall on the shoulders of one person. Make sure others are taking leadership – not just “support” – roles in different aspects of the project (i.e., fundraising, a steering committee, etc.). The end result will be a stronger, community-based approach that encourages everyone to embrace the cause rather than rejecting it as a personal crusade. At the same time, leaders must let others help.
- Switch out leaders on major projects over time. Avoid frustration, accumulation of baggage and promote the idea that the problem is a breed problem by cycling folks into and out of key positions. Steering Committees may be a good way to go.
- Remember that the researchers are there to help you, but they need your help to do their work. Hate the person in charge? Go around them to the researchers directly. They are ethically required to keep your information confidential and they absolutely will. Trust them to do their jobs.
- Be kind to one another. At the end of the day, people won’t remember what you said or what you did, they will remember how you made them feel.
Looking Forward
Now, the foregoing story will likely seem very negative, but I wanted to share my own thoughts and feelings looking back as honestly as I can. I would be wrong though to not acknowledge that while there were many missteps on the journey to this cardio test, a lot of things went right too – and a lot of people did step up to get us there.
This is the story of a small breed that made things happen. WE did this. There is a list of people deserving thanks that is as long as my arm. Michelle, Jim & Pat, Blossom, Carolyn…thank you. Owners and breeders of puppies who took part, donors from around the world and particularly the American and Canadian Manchester Terrier Clubs…thank you.
Mom…I love you. Thank you for being brave, persistent and honest. For not allow me to crack up or melt down. And for setting an example I continue to aspire to by fighting harder when so many would have given up. You are the original Breeder on the Edge, and you have proven that there is always a way to avoid falling off the cliff.
And so I will end not with negativity, but with hope. Our researchers went above and beyond over and over again. Clubs and individuals supported the study financially in ways we have never seen before in our breed. Many breeders and owners did bravely share their stories and make their dogs available for testing and study. And last year, breed lovers came together to raise more money than has ever been raised for any initiative in our history.
For those reasons, we have much more than just a test to celebrate.
Post Script: I struggled with this month’s post. It is probably one of the most difficult things I have ever written because it required a level of self-reflection, honesty and vulnerability that was uncomfortable, at best. In fact, I wrote it many weeks ago and haven’t been able to bring myself to publish it until now. I may not have ever shared it but for one realization: Breeders all over the world are facing problems and situations like this in their own breeding programs every day – and they too feel alone. Hopefully this makes them feel a little less so.