Gina Clowes: Welcome everyone.
I'm with my very special friend today-- one of the best known advocates in the food allergy world, my friend, Sara Shannon.
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 (which is a severe allergic reaction) 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, I think, we've been in what, Seattle, New York, Chicago, Texas, Pennsylvania, Ontario? We've been to a lot of places together. Hopefully we'll get together this year.
Sara: That's right, yes. Also, Niagara Falls.
Gina: That's right.
Sara: We had a special meeting there. That was really wonderful. 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. They replayed it on the radio. They played it with BBC "A Year in a Year." I think it was recognized in England as being a well-done documentary.
Because of her death, Sabrina's documentary went around the world, Australia, the United States, England and Canada. It's been listened to 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, some times 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. 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 and 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 then, right?
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: 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.
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.
|Sara Shannon, Kathleen Whelan, Gina Clowes|
Gina: Do you remember that?
Sara: Oh, yeah. There is a lot of synchronicity around Sabrina, all the time.
Gina: Yes, you said a lot of things that happened. I'll never forget Kathleen's 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. I posted something on Facebook that we were going to be talking today. Gwen Smith our mutual friend who is editor of Allergic Living, wrote that, "Sabrina would have been 21 in May this year." How do you deal with those milestones?
Sara: I think everybody has crosses in life, and this is my cross. I didn't see it coming. I never thought this would be my cross.
But, I try to - I acknowledge that she's 20. I also acknowledge what she was at 13. I feel Sabrina's growing. She's growing with her law. Now, I'm going to Queen's University which is a very prestigious university in Canada, to talk about Sabrina's Law. I feel that Sabrina, perhaps, would be at Queen's now, because she'd be 20. It's almost like, I'm going where Sabrina would have been.
I always wanted Sabrina to travel, and see the world. I think with her 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. And as you know, now we have the self-carry epinephrine law, and we're going to have school guidelines!
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.
On a related note, and we had discussed this as well. When you hear these stories for example, the poor young girl in Chicago who just died last month at a classroom party. How do you - what happens to you when you hear things like that?
Sara: First of all, I was devastated. I was very saddened to hear about Katelyn's death and to understand - to know that there were so many similarities about Katelyn and Sabrina's deaths. It happened at school.
There were things that went wrong. No one saw it coming... just so catastrophic. I see many similarities. I may have mentioned - in my little note to the family I said, "Sabrina has another friend in heaven."
Gina: Oh, Sara.
Sara: It's true. Sabrina does - I do feel young people that die from anaphylaxis, it's so tragic. Perhaps in heaven they connect together and they're both about the same age.
You know, with anaphylaxis there's something you can do. It is preventable. I think it's just so tragic. I say this from a deep part of my heart, Sabrina doesn't need any more friends in heaven.
She has enough friends right now. Let's try to keep her or all our children alive that have food allergies. My condolences go out to the family. I know their pain and suffering and how they feel. It's - it's very, very tragic.
There's part of me that feels I didn't do enough in Chicago, because I was at the Chicago FAI (Food Allergy Initiative) fundraiser in Chicago. I feel that I didn't do enough in Illinois. I know that they do have a law that they got passed recently.
Gina:I think the school was actually in the process of deciding how they were going to implement it. It wasn't required for them to have things on the books just yet.
Sara: It is an epidemic health issue. With anaphylaxis, time is of the essence. Like in Chicago, Illinois got this law in place. It was in the process of being implemented. You really have to snap to it. Time is really an important element with anaphylaxis. All it really takes is an interest and a concern and the good intentions. You do a little research. You learn about anaphylaxis. You learn about the epinephrine. It's in everybody's interest.
Gina: Right. We don't get a sign from God or the universe on the day that something bad is going to happen. We have to be vigilant every single day. There was no sign on the day that this tragedy happened to your daughter. There was no sign. Everybody has to be onboard. We have to be prepared.
Sara: That's right. You have to get everything in place immediately. There's no "Well, we'll do that another day. We'll take our time getting the law passed. " No! no! You have to do it immediately! Sabrina had a reaction when she was in a new school, a new high school. She had moved from grade seven to grade eight, and immediately into high school, which her coroner said it was a very crucial time, because it's like, when you go from one hospital to another, it's very -
Gina: You're vulnerable.
Sara: You're very vulnerable. Sabrina went from one school to another. Information may have been misplaced..
Gina: You know, it's like Kathleen said. Things just didn't go her way that day. But if we look at what happened with Sabrina, and we have discussed this, if anyone would have taken a different course - if anyone would have been on board, it might have been enough.
If the cafeteria staff had been trained and they understood cross-contamination, if that teacher in her geography class had known to look at Sabrina through allergy colored glasses and say, "Uh-oh, she's not felling well. This could be anaphylaxis." If the EpiPens had been immediately accessible, if the school had not tried to reach you, if they had just enacted a plan and injected her ...
We don't know of course. You never know. Any adult when caring for a child with food allergies, you may be the difference.
Sara: Exactly. Generally - I think all people are good. They want to be on board. They want to be helpful. They just need to be educated. They need to be taught. When ignorance happens, I used to say well, ignorance belongs to the person. I just ignore it. It's not like that with anaphylaxis. When there's ignorance, it can cost a life.
Once you know something, whoever hears this or reads this or listens to it, once you know something, you're part of it. You're part of the problem. You also can be part of the solution. It can be very empowering to know what to do when there's an anaphylactic reaction.
Every child has the right to be safe at school. The child needs to feel that, and know that!
When a child goes to school and they don't feel safe at school, how are they going to reach their potential? How are they going to learn to their best ability when their food allergy is not being acknowledged?
[When a tragedy strikes] every one involved is affected forever, the students. It brings on a great trauma for everyone.
The knowledge that it didn't have to happen. The knowledge that I know Sabrina could be alive today, a 20-year old going to university, studying to be a teacher, perhaps dating a lovely fellow, making plans to get married, for me to be a grandmother, which I'll never be now. I'll never be a grandmother. Also for me to go shopping with Sabrina and pick out some fancy clothes and maybe we'd be in disagreement about clothes because she had her ideas, and I had mine.
Gina: And you'd love that. You would love that more than anything
Sara: Oh, yes! I know that she could be alive today. I know if she was given her epinephrine in time, and the school had everything in place, that maybe she could be alive.
We have the tools! We have the education to deal with anaphylaxis--Sabrina's law and laws like it. It's in everyone's best interest to learn and to reach out and to find out about it. Sabrina's law gives us hope that our world can be a better place.
Gina: Yes, absolutely. Well, that's why I dedicated my book to you, The Advocate and the Angel to you and Sabrina. I appreciate everything that you do.
Sara: I feel I need to do more, Gina.
Gina: If I really went into it, I would start crying.. I really, really appreciate working with you. I appreciate you sharing your story. Obviously, we talked ahead of time about this, and you wanted to share it. I know it's not easy. I also know that it makes a difference. It made a difference in my own family. It truly did. I think it makes a difference for a lot of people. You are amazing.
Sara: You're amazing Gina, with your understanding and with your book, Ten Things. Just reaching out about how fearful it can be when another parent offers the child a cookie and their child doesn't know if that cookie is safe. When other kids are eating and the child with food allergies is ostracized or they're not included. All those little points that you bring out in your book, it's so beautiful. This will help educate the people involved. No child should be left out because of his food allergies.
Gina: I mean the safety of course, is paramount. But their emotional well-being is very, very important too. It's not a question of either/or. Would you rather breathe or would you rather sleep? They deserve to have their heart and minds and bodies all nurtured and taken care of.
Sara: Oh, yeah. All through North America is obesity problems. Everything is around food. Why not have schools without food? They have food here, food there. Why not have a whole other idea in place, like reward with a calculator or fancy colored pencils or a paintbrush or you know, something a little more creative than, food.
Gina: I'm sure there are millions of moms who are nodding their heads [laugh] saying, yes, absolutely yes!
It gets really tough, and there's a big difference between your child going to an outside birthday party and having to bring his or her own separate cupcake.
In school, if you're celebrating in school, why is it not inclusive? I don't know how it is in Canada, but in the United States, typically, if you want to invite all the kids to your birthday party, they'll let you distribute the invitations in class. If you're only inviting certain friends, they don't really want you to do that, because you're excluding some of the kids. Yet, they'll let you give out the cupcakes where two or three kids, are not able to participate. I don't understand how that works, but that's often the norm.
Sara: That all has to change definitely, because we live in a different world now. We live in a world where there are all sorts of issues around food. I would hope that all of North America, in fact I welcome everyone in the world to embrace Sabrina's law.
You know what I did before the interview?
Sara: I lit a candle because I find candles are very calming. On the candle, it says, "Be the change you wish to see the world."
I want Sabrina's law around the planet. It's my hope. I mean, it might be farfetched, but why not?
Thank you Sara!
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