#39 SABRINA'S LAW
SABRINA
Sabrina's Law was signed into effect on January 1, 2006. The law requires every school board in Ontario to establish and maintain an anaphylaxis policy to help students with serious allergies. It also requires that schools create individual plans for students at risk of anaphylaxis. Sabrina's Law was the first legislation of its kind in the world and has served as a model for legislation in other provinces and territories, as well as in the United States.
Sabrina's story is told here in an interview with Allergy Moms and an article by Allergy Living.
This article about Sabrina’s Law was originally published in Allergic Living’s Spring 2005 print edition.
In the radio documentary she made, Sabrina
Shannon, just shy of 10, holds the microphone in front of her mother.
She asks what it’s like to have a daughter with food allergies. Then she adds:
“Do you think I’m beautiful?” With mock earnestness, Sara Shannon replies, “I
think you’re probably the best-looking girl in the world.” Sabrina collapses in
a fit of giggles.
SOME KIDS just have that energy,
that sparkle in the eyes, that irrepressible spirit. Sabrina Shannon was one of
those, a pure pistol of a kid. Her personality shone through in the radio
documentary she produced with her aunt, Kathleen Whelan, which originally aired
on a CBC Radio program back in 2001. The documentary was a first-person
narrative about living with allergies. Sabrina, who was at risk of anaphylaxis
to peanut, dairy and soy, proved a natural at the mike. She interviewed her
girlfriends, her mother and gave her own views of life with food allergies. It
was a great 12 minutes of audiotape. (Sabrina’s
“A Nutty Tale” is at https://www.allergicliving.com/2010/09/15/sabrinas-nutty-tale/
)
But this anecdote takes place in the past
tense. Sabrina’s tale turns, sadly, to one of tragedy. She is the food-allergic
kid who didn’t make it, the bright light extinguished.
On September 30, 2003, Sabrina died in hospital
following an anaphylactic reaction. Her mom, her dad, her Aunt Kathleen, her
many other relatives and friends have been devastated by her death. But this is
also a story of hope born of tragedy, of an organized effort to do justice to
Sabrina’s memory by making sure no other child suffers a similar, likely
preventable death.
Sabrina, the girl who had her final lunch from
the high school cafeteria at the age of 13, became the rallying point for a new
law. One that requires anaphylaxis safety plans in schools in Ontario, the
biggest Canadian province. It is legislation that would come to influence
change in schools across North America.
She Thought It was Her Asthma
On September 29, 2003, Sabrina balked at her
mother’s efforts to have her take yet another allergy-friendly sandwich to
school. It was the end of the teen’s first month of Grade 8 at Bishop Smith
Catholic High School in Pembroke, a small city in the Ottawa Valley. She told
her mom that the previous week, she’d eaten French fries once in the cafeteria
after checking that they didn’t contain any of her allergy triggers. The fries
were safe – and tasty. She wanted to eat them again at lunch today. Sara
Shannon resisted at first, but she also trusted Sabrina’s judgment. Her
daughter had always been responsible about her food allergies. She asked the
right questions before eating, and carried her epinephrine auto-injector in her
backpack, along with her asthma puffer. Sara agreed.
Around 11:40 that morning, Sabrina and her
best friend went to the cafeteria. Sabrina ordered fries after again checking
that they were cooked in vegetable oil rather than peanut oil. In the class
after lunch, Sabrina began to wheeze. Thinking she was having an asthma attack,
the teen headed for the school office at the other end of the building. By the
time she got there, Sabrina was having serious respiratory trouble. She kept
repeating, “It’s my asthma.”
Dairy Contact and the Tragedy
A teacher raced to Sabrina’s locker to get her
EpiPen auto-injector in case it was in fact her food allergies; school
officials called an ambulance. Sabrina collapsed and lost consciousness, going
into cardiac arrest before the device could be administered, before the
ambulance arrived. The girl’s heart was restarted at the local hospital and she
was airlifted to the Children’s Hospital of Eastern Ontario in Ottawa.
Sabrina’s young heart and lungs were strong, but she’d suffered significant
brain damage.
Later, it would be determined that her
devastated condition was the result of anaphylaxis due to food allergy. The
coroner posited that the allergic trigger was dairy protein. Sabrina would have
been exposed to dairy through tongs used to lift her fries. Those same tongs
had been used to serve orders accompanied by poutine, the French
Canadian topping of gravy and melted cheese curds. She would have been allergic
to the curds.
On September 30, a day after her reaction,
Sabrina was removed from life support and died.
At a press conference in Ottawa almost a year
after Sabrina’s death, Dr. Andrew McCallum, the chief coroner for Eastern
Ontario, called for the implementation of comprehensive anaphylaxis management
plans in schools. He said high schools, in particular, needed to pay better
attention to the need to protect allergic children such as Sabrina. All
schools, he said, should keep epinephrine auto-injectors available in the
school office and staff and teachers must have proper training on the use of
the device.
Then Sara Shannon stepped up to the microphone
to tell the assembled media that, while her daughter lay dying, “I made a
promise to Sabrina that I would do whatever is possible to prevent this fate
from happening to any other child. Please help me to keep my promise,” she said
softly.
The Fight for a School Law
Sabrina Shannon died two days before the
Liberal Party was voted into power in the province of Ontario. The party even
had a line in its platform promising that, if elected, it would require public
schools to have anaphylaxis plans based on province-wide standards. Such words
were encouraging to those who had been lobbying, even before Sabrina’s death,
to pass a law requiring school allergy procedures. Dave Levac, a Liberal MPP
for Brantford, Ontario and a former high school principal, first introduced a
private member’s bill to protect anaphylactic students in provincial elementary
and secondary schools in June 2002. While many schools had anaphylaxis plans in
place, he thought it was dangerous that the standard was not consistent. His
view is that uniform procedures will avoid “the arguing between schools
and parents, the gnashing of teeth in the protection of a child.” His first
bill died on the order paper under the previous Conservative government, as did
his next effort. But with the Liberals barely sworn in to office, Levac’s third
attempt – the proposed Act to Protect Anaphylactic Pupils – became Bill 3,
numbered near the top of the pile.
The MPP and Cindy Paskey, then president of
the Niagara region’s anaphylaxis association, had worked together organizing
letter campaigns and petitions. They were elated as Bill 3 passed second
reading on December 4, 2003. Now it just needed to go to a committee for a
consultation process before a final reading enshrined it in law. But for more
than a year, the bill simply sat. By March 2005, Paskey and Laurie Harada, the
executive director of Anaphylaxis Canada, were concerned. The clock was ticking
on Bill 3 – if it didn’t get passed during this session of the legislature, it
would die.
The Bill Becomes ‘Sabrina’s Law’
Then the Shannon family stepped in to help,
and Sabrina soon became the human face of this legislation. Anaphylaxis Canada
dubbed Bill 3, “Sabrina’s Law,” driving home Shannon’s
point from that Ottawa press conference that no other child should suffer her
daughter’s fate. Sara Shannon and Laurie Harada met with government officials
who were receptive to their concerns. After all the delays, on May 16, 2005,
the final vote on Bill 3 was held in the legislature. As parents and allergic
children watched intently from the public gallery, all three parties voted in
favor of Sabrina’s Law. It passed unanimously.
The law, which took effect January 1, 2006,
requires Ontario school boards to have all principals implement anaphylaxis
plans that include: strategies to reduce exposure to allergens,
procedures to communicate to parents, students and employees about
life-threatening allergies, and regular training on dealing with
life-threatening allergies for teachers and staff. In addition, principals
are required to: develop an individual plan for each student at risk of anaphylaxis,
maintain a file that lists that student’s prescriptions and emergency contacts
and ensure that parents enrolling pupils supply information on a child’s
allergies.
What the Liberal government didn’t realize, is
that the progress of Sabrina’s Law was not just watched by relatives of
anaphylactic students in Ontario. The legislation was also drawing attention
across the United States and the rest of Canada.
Sabrina’s Law: Far-Reaching
In 2004, Sabrina’s aunt Kathleen Whelan wrote
to Robert F. Kennedy Jr., who was on the board of the Food Allergy Initiative
(now FARE), the nonprofit research and education organization. She had learned
that Kennedy has a son with peanut allergy. Whelan let him know about Sabrina’s
tragedy and that the family wanted to tell her story so people would appreciate
the gravity of anaphylaxis. Kennedy was moved. For its annual gala journal, he
asked FAI to publish a story that Whelan, a writer, had composed about
Sabrina’s death. As guests dined and raised tens of thousands of dollars for
research, they also read Whelan’s words about her niece – and the hole her
death left in so many hearts.
Sabrina’s family impressed FAI and Rachel
Sanzari, who was its administrator. “It’s just amazing that they took a tragedy
and used it to make anaphylaxis an issue,” she said in May 2005. A law in a
province the size of Ontario “will serve as a model here in the United
States.” [Editor’s note: Today, there are several state allergy
laws and policies in the U.S., and a
section in the federal FAAMA act of 2011.] “No matter
where you are,” said Anaphylaxis Canada’s Harada, “the issues are very similar,
the emotional aspect and what’s going on in schools. So many jurisdictions are
looking at what’s happening here because nobody seems to have any law. There
are guidelines, there are directives, there are ministry of education policies,
but there’s no law. This is precedent-setting.”
In the end, reminds Levac, Sabrina’s Law is
about saving students’ lives. It’s a point that is hard to forget around Sara
Shannon. “I loved Sabrina so much. I miss her terribly,” she says. “We have to
make sure this doesn’t happen to another child. When everything is done,
everything is in place, every procedure, every emergency plan, then if a child
dies, we can say, ‘there was nothing we could do’. But when we know that there
is something we can do to prevent this, we can’t live in a world of denial.”
Sabrina’s Law fulfills a promise that Shannon
desperately wanted to keep.
Reprinted from Allergic Living’s Spring 2005
issue. Updated February, 2011.
Interview by Gina Clowes of Allergy Moms
A MOTHER'S PROMISE My friend Sara Shannon lost her
dear daughter Sabrina on this day several years ago to an anaphylactic reaction
to traces of dairy on a serving utensil at lunch. (Story below)
Sabrina's
story was something that impacted me so deeply. I met Sara at a conference in
Toronto in 2006 where we were both speaking. Since then, I've had the pleasure
of working with Sara in New York, Seattle Chicago, and Pennsylvania. (And we're
not done yet!)
I'm very
grateful that Sara has shared Sabrina's story and worked tirelessly in the US
and Canada to pass laws to protect food allergic children in schools. Although,
I can't imagine the pain that these anniversaries bring for her.
The
following is part of an interview I did with Sara several years ago. Let's all
do our part to help Sara keep her promise to Sabrina. And in the meantime,
please send Sara some love tonight.
Gina
Clowes: I'm with my very special friend today-- one of the best known advocates
in the food allergy world, my friend, Sara Shannon.
Welcome,
Sara!
Sara Shannon: Hi, Gina. How are you?
Gina: I'm just great! For those of you who don't know Sara, she is the force behind Sabrina's Law in Ontario, Canada. Sabrina's Law protects children with food allergies in schools. It was named after Sara's 13-year old daughter who died from anaphylaxis after eating french fries in her school's cafeteria. They were contaminated with invisible traces of dairy. Not only did Sara change the law in Ontario, she's traveled throughout Canada and the United States to try to do the same here to help get legislation in other locations
Sara Shannon: It was wonderful to see all the US cities and have all the support and enthusiasm that I find across North America. It's just really great.
Gina: Yes, and I love your energy. In fact, for those who don't know, I actually named my website after something you told me one time when I was whining to you about how hard it is sometimes. You said, "Oh, Gina. You do a wonderful job. God picks the allergy moms." That's why I named my website, Allergy Moms. So, thank you for that!
Sara: Well, thank you, Gina. Thank you very much. I think that we are all special human beings especially the allergy moms, and the children with allergies. There's a wisdom that happens with anaphylaxis, for sure.
Gina: It's a nice way to look at it. Let's start with a little bit of background about Sabrina, for those of you who don't know her story. Let's start before 2003. Was Sabrina aware of the seriousness of food allergies?
Sara: Oh, yes. Sabrina was very much aware of her food allergies, because she had serious reactions where she had to be hospitalized. Each time it was a very close call. She was diagnosed with milk and peanut allergy, and then eventually, soya. I actually, I thought it wasn't that bad. I felt relieved to know that there were only three food groups that she was allergic to.
Gina: Still, once you have even one food allergy and you just can't grab a cookie or eat - once you start reading labels, it's life changing. Having multiple allergies is more difficult, but even one allergy is a challenge. I know you had a lot of challenges through the years and eventually, she [Sabrina] worked with Kathleen, your sister on a radio documentary. I think Sabrina was only ten at the time.
Gina: We will link to that with this interview. It's called "A Nutty Tale". It sadly did not become nearly as popular until after she died.
Sara: That's right. After she died, people were seeking it out. Because of her death, Sabrina's documentary went around the world, Australia, the United States, England and Canada. It's been listened to by many, many people. The sad thing is you hear Sabrina's humor, her voice, her laughter. You know that she's very knowledgeable and educated about her food allergies. She knows how to take care of herself with food allergies. Even with all that knowledge, it wasn't enough to save her the day that she had her fatal reaction.
Gina: Let's talk a little bit about that. After years of dealing with multiple food allergies, sometimes food was an issue. Sabrina was sick and tired of eating sandwiches, because she hated them. What happened that morning when you tried to give her a sandwich?
Sara: She said, "Mom, I'm not eating this sandwich. I'm sick of sandwiches. I've eaten french fries." I remember feeling totally shocked that she had eaten french fries [at school]. She goes, "Yes, mom. I ate them the Friday before, and they were safe. They're safe. I checked." French fries were something she could often eat when they were fried alone in vegetable oil. We'd go and we'd check and read the labels together. I remember when we went skiing one day in Quebec. We ordered french fries. We asked to see the oil. Together we read the ingredients. We discovered that the oil was just clean vegetable oil. All they did was make french fries in this frying pan and they were safe.
Gina: She was 13, so she knew how to check on ingredients. And she did check.
Sara: That's right. They said, "They're just potatoes and oil."
Gina: Right, so you gave her the money for the french fries.
Sara: Yes. So, I drove her to school. She had her shorts on, these jean shorts and a little t-shirt that said, "Life Saving T-Shirt" on it. I bought it at The Gap. She had her knapsack and her lovely red hair. I kissed her good-bye, gave her a hug, and off she ran. I watched her run up this little hill towards the school. She was running a little late. She had such energy and vibrancy as she ran. She ran into the school. Then I just - I was off. That day I was off. It was a Monday. I went for a swim at the pool. I remember it all. You know what's funny is when you experience trauma, you always remember everything in detail. I remember swimming at the pool. I remember leaving around 12:25 or 12:30 to go home. The minute I got home, I came out. I didn't even brush my hair or wash my hair. I just threw on my sweats and I went home. I lived like two minutes away from the pool. I was walking and when I got home my cousin Paul said, "Sara, call the school! Sabrina's collapsed!"
Gina: You got the call that every allergy mother dreads.
Sara: Yes, the one every allergy mother dreads. I couldn't believe it. The word "collapsed," that's the worst word for an allergy mom to hear. Sabrina had always survived her reactions. She had never had a reaction where she collapsed.
Gina: This is such an important point for anyone on the call. When I hear, "mild peanut allergy," for example, and I know you and I both feel the same way - we cringe at this. Because reactions are unpredictable. Most everyone who has had a fatal reaction has had a milder reactions previously.
Sara: Yes. Yes.
Gina: So, you drove to the school.
Sara: My cousin Matthew drove me to the school, and when I got there, they were bringing Sabrina out of the school. Her arm was dangling. It was a beautiful blue day. The sun was shining on her red hair. As I recall, I could see the little spots, like black circles on her arm. It was dangling down.
Gina: Oh, no. That's just something that no parent should ever see-- their child being carried out on a stretcher.
Sara: Yes, and have her arm dangling, and like that.
Gina: It must have been terrifying.
Sara: Completely. I started to scream. I couldn't believe what I was seeing. It was awful. Mr. Young came running towards me. He said, "Oh, God!" because he didn't want me to see that. Then, another teacher got in the car with Matthew and we followed the ambulance to the hospital. Then we went into the hospital. They were resuscitating Sabrina, and unaware to me that, they didn't have any heartbeat - unaware to me there was no blood flow.
Gina: So our listeners can understand what happened: She felt ill in the class she had following lunch. Unfortunately, they let her walk to the office with another student, and she started stumbling. I mean she really was getting sick very quickly. Then her last conscious moments were as she arrived at the school office. She was complaining of difficulty breathing. It was then, that someone, I'm not sure, was it a teacher or maybe her friend who said "Maybe, she's experiencing anaphylaxis?" Then, was it a friend who ran to her locker to get her EpiPen?
Sara: Yes. A friend ran. I think also, too, she was sitting. When you have an anaphylactic reaction, the worst thing you can do is stand up. She was sitting, and she stood up. At that point, she collapsed. I got the impression they were trying to get a hold of me. I think a lot of times schools will do this. They try to reach the parents. They try to transfer the responsibility to the parent. With anaphylaxis, there's no time to wait! There's no time to play with! You have to respond to the reaction! You can't call the parent and say, "Come and get your child. Your child's having an anaphylactic reaction." I mean I've heard those stories before.
Gina: Yes. I do too.
Sara: What happened then was that I was told to meet at Children's - after Sabrina had been transported to the other hospital which is 90 miles from Pembroke. When we got there, I found Sabrina. They were trying to revive her. They were trying to pump her heart. They had all this machinery around her. There were all these people. Sabrina had the best emergency medicine.
Gina: Of course.
Sara: I overheard [the doctor] saying, "I think it's probably brain damage." I gripped myself at that moment. I thought: Ok, I can live with that. I can deal with brain damage. I can deal with it. So, I went into the room, and they were reviving her. They were trying to revive her and they couldn't get anything. So, I said in a very authoritarian voice: "Sabrina, you come back right now! We need you. Come back right now!" They got a heartbeat right after I said that.
Gina: Oh, my!
Sara: I couldn't believe that. So at that point, they said look at that- they got a heartbeat!
Gina: And you had a little ray of hope?
Sara: Yes. So, I went home and got my stuff. They were transferring her. I got my overnight bag. I figured I was going to be there for a while. When I got back to see her, oh my God, she was hooked up to all this machinery. I held her hand, and oh, I couldn't stop crying. I just - it was horrible to see her like that. But, in my mind, I was making plans... I have to move to Ottawa. I'm going to be with Sabrina all the time. I have to move to Ottawa and things are going to change.
Gina: Of course, this your only child.
Sara: Yes. Then I thought she'll have to have recovery. She won't ever be the same. I knew that, because the way she looked. I thought I would never leave her side. Even when I went downstairs for coffee, I just felt this anxious feeling and wanted to be beside her. I just wanted to be with Sabrina. I think it was like 3:00 that night, the doctor said to me - "You have to have at least a couple of hours sleep." So, he gave me a medication to make me sleep. I woke up at 4:00 and I was back with her. I was with her all day. That day, the 30th. I heard comments like: "It looks like her kidneys are failing." Dr. Cleary said, that her reaction did a lot of damage to her intestines. I was desperate for a miracle. I just wanted her to come back to life, and be fine again. I was praying...
Gina: Did you have any idea how grave the situation was at that point?
Sara: I knew it was.
Gina: Did Mike know? Did Sabrina's dad know?
Sara: I'm not sure about Mike, but his girlfriend kept saying, "She's going to be fine. You stop crying. "
Gina: Trying to comfort you.
Sara: I'd hold her hand and I would talk to her. It gives me comfort to know that when you're in a coma that you can actually, maybe, hear the person.
Gina: I'll bet she was hearing you.
Sara: We played the music from Chicago. She loved that! She didn't want anyone to know that she loved musicals.
Gina: That was her little secret!
Sara: All the kids are supposed to like rap or whatever, but she loved Chicago! Then at one point, Dr. Cleary called in a neurologist. The neurologist declared her brain dead. Just to hear those words, "brain dead," it's so awful to have everything robbed from your child with a food allergy reaction. It's just awful. Here was this vibrant girl who. She had above average intelligence, and was headed in a great direction in life. You know, she could do anything. I remembered her saying to me, "I don't think I'd want to be a doctor, mom." I said, "Why," because she really - really she was that smart. She could do anything.
Gina: Yes.
Sara: I said, "Why, Sabrina?" She said, "Well, I don't think I would want to give any patient any bad news."
Gina: Isn't that ironic? Oh, my goodness. Because they ultimately did give you some bad news then.
Sara: Yes. They said she was brain dead. But you know prior to her death, you have those little books with sayings. I happened to read one the Friday before she passed away, the little saying was, "You can bring it all with you." So, I said that to her. I said, "You know, Sabrina, all your gifts, all your talents, everything you're so good at, your painting and your reading, and your ability to be so creative and terrific and intelligent." I said, "You know, you can bring it all with you, when you pass." After I said that, I did notice that everything really started to fail. I think she knew she could let go then.
Gina: When did it occur to you to make a promise to her, make the promise?
Sara: As she way lying there, I said, "You know, Sabrina, I'm going to do everything possible that this will never happen again to another child or family, ever again." I held her hand, and she was on life support. I made that promise. I thought the promise would be like, me and my close friends. I had no idea that Sabrina would be really getting me hopping and moving in such a large scale!
Gina: Well, it's both of you, Sara. It's absolutely, both of you. I'll never forget that time, when we were in Niagara Falls at that conference. We were supposed to go outside the day before, and it was rainy. So, we went out the next day, and it was sunny. Then all of a sudden, you just got really ...I have the chills right now. Then you're like: "She's here!" We took pictures too. You can almost - I feel like you could see it on your face.
Sara: Yeah. She is. Yeah. She gives me signs a lot.
Gina: Do you remember that?
Sara: Oh, yeah. There is a lot of synchronicity around Sabrina, all the time.
Gina: I'll never forget Kathleen's [Sara's sister, Sabrina's aunt] quote that "Things just didn't go her way that day." They certainly didn't. Strangely, a lot of things went the way to kind of clear a path for you to keep your promise to Sabrina.
Sara: It's a very important promise. It's a promise that I hold near and dear to my heart. I'll do my best to honor and respect it forever, because when it's my time to go, I want Sabrina to greet me with, "Yeah, mom. You did it. You kept [laugh] your promise!"
Gina: I love that, Sara! That's awesome. I mean, you do an absolutely amazing job in the midst of all of your grief.
Sara: I always wanted Sabrina to travel, and see the world. I think with her law [Sabrina's law], and her spirit, in a sense, she is seeing the world. She is reaching out to a lot of people. She is making a difference.
Gina: Absolutely. I mean not only Sabrina's Law, but I know that you've helped out and even came to Pennsylvania to help.
Thank you, sincerely, for your work with that. Obviously, we have a lot more work to do here in the United States and in Canada, as well.
Sara: I feel really good, just right now, talking to you. I feel like I'm fulfilling my promise.
Gina: You certainly are. Thank you for sharing Sabrina's story once again.
Sabrina’s Law has saved so many lives..
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