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  When food can be fatal: part two ROKEYA RAHMAN: Everybody like him, everybody, children, the young and older — everybody like him. HELEN DALLEY: It's just past the third anniversary of the day Siddiqur and Rokeya Rahman's 13 year-old son Hamidur died after a severely allergic or anaphylactic reaction during his Year 8 excursion. SIDDIQUR RAHMAN: I am still proud, always proud about what he — what sort of person, what — HELEN DALLEY: The family battled daily to come to terms with the searing grief of losing their son. SIDDIQUR RAHMAN: It is impossible thing. I wish we can but it is no way any parents — not only me — any parents lost their kids, they can't do this. I need my son. HELEN DALLEY: In recent weeks, Sunday has highlighted several cases where young Australians have died or lost all quality of life after an anaphylactic reaction to a simple food. There's the young mother now catastrophically brain damaged after eating at an Asian restaurant in Sydney, the teenaged boy who died after tasting a touch of satay sauce while on work experience and the 15 year-old girl who died in her mother's arms on the football field after mistakenly eating a shaving of peanut in a salad and this morning the Rahman family of Sydney also speak out for the first time, imploring the community to treat food allergy seriously. Like many children featured in our story, Hamidur Rahman suffered eczema, asthma and was severely food allergic. Never properly diagnosed with food allergies, his dermatologist, only giving him creams for his eczema, dismissed food as the cause. But Hamidur knew he got sick from peanuts and avoided them. As the school camp approached, Hamidur was apprehensive about the food but he felt prepared after he and his mum spoke to the teacher. SIDDIQUR RAHMAN: She said I don't like — ROKEYA RAHMAN: Peanut butter. SIDDIQUR RAHMAN: Peanut butter. OK, we forget the peanut butter. We give you fantastic noodles. ROKEYA RAHMAN: She said to me — do you give him any medication, puffer or something? I said yes, I give everything, I give his all medicine ...Ventolin. HELEN DALLEY: The family believes meal time menus were changed for Hamidur but a trivia evening wasn't. During a Trivial Pursuit challenge, players tasted different foods. His parents, to this day, don't understand why but Hamidur tasted a teaspoonful of peanut butter a teacher handed him. SIDDIQUR RAHMAN: He said he hold the jar and there's written peanut butter and Hamidur knows this is peanut butter and he ate it. This is — they blame Hamidur, my son. ROKEYA RAHMAN: I can't believe it ... because he is very, very allergic, everything. SIDDIQUR RAHMAN: He was very cautious. ROKEYA RAHMAN: Because...the smell. You put in some peanut and if he smell it, he said "Oh Mum — I feel vomiting". HELEN DALLEY: He became sick and went to the bathroom. While details are sketchy, Hamidur collapsed on the bathroom floor and was dead by the time an ambulance arrived. Later that night came the knock on the door at home every parent dreads. ROKEYA RAHMAN: I say — where is Hamidur? He said — he's passed away ... My husband is running. I don't know, can't remember ... SIDDIQUR RAHMAN: Still I don't understand this thing. And I ask what happened? He said he ate peanut butter. I said,"How come? We informed the school." HELEN DALLEY: The Rahmans say they've had little explanation since from Hamidur's school and a proposed coronial inquest still has not materialised, three years after their boy died. SIDDIQUR RAHMAN: He passed away three years. I am still waiting for the truth. As a father, I don't know the truth and every time I try to go to school ask the questions what is the truth, they said to go to legal system. This is the answer. SANDRA HEALY: I think the severity could have perhaps been explained to me a little bit more. We had no understanding that this would be where we would be sitting when she should have been 17 learning how to drive a car. HELEN DALLEY: She would have been doing her HSC this year. SANDRA HEALY: Yeah, HSC. Yeah, that's tough. HELEN DALLEY: Sandra and Greg Healy, too, suffered the ultimate loss. Their 15 year-old, Corinne died after an anaphylactic reaction to just a shaving of peanut she unknowingly ate. Like the Rahmans, they too are stunned by the speed and ferocity of the killer reaction. SANDRA HEALY: Once again, it's just a devastating shock — devastating mistake, I suppose, an accident that we don't fully understand, I suppose. So, it's difficult to try and cope with it. HELEN DALLEY: The doctors had never led you down that path to thinking one day she could have a very severe reaction? GREG HEALY: No, not at all. There had been no sign of it, no discussion about how acute this whole situation could be. HELEN DALLEY: Like Corinne Healy, Hamidur Rahman was not carrying an EpiPen — containing a dose of life-saving adrenaline — and Siddiqur and Rokeya say they'd never even heard of one. SIDDIQUR RAHMAN: None of doctor tell anything about the EpiPen. None of them. None of them. HELEN DALLEY: The tragedy of Corinne's and Hamidur's deaths is they occurred only in recent years when much has been known by medical specialists and support groups about the deadly seriousness of anaphylaxis. SIDDIQUR RAHMAN: And this is Hamidur's room. Hamidur used to live here and this is his ... HELEN DALLEY: Yet the Healys, like the Rahmans, had so little information and the Rahmans claim their warning about peanuts went unheeded. MARIA SAID, NATIONAL PRESIDENT, ANAPHYLAXIS AUSTRALIA: That child died because people weren't properly informed and if we've got the information here, we should be sharing it to prevent any further deaths. SANDRA HEALY: If we can possibly help some mums and some families that they don't have go through this pain, that would be well worth what we're doing here now. HELEN DALLEY: The community at large has remained ignorant about the severity of food allergies. Partly because governments have failed to treat anaphylaxis as a critical health problem and push the message far and wide. MARIA SAID, NATIONAL PRESIDENT, ANAPHYLAXIS AUSTRALIA: Everyone's doing things in an ad hoc manner. Some governments are helping in different areas but we really need the federal and state government to really acknowledge this as a public health issue and to embrace it and then do what they can with organisations such as ASCIA. HELEN DALLEY: With figures showing 30 in every 1,000 Australian children potentially at risk of a deadly allergic reaction, the need for concerted effort at the highest government level is obvious. Deaths are uncommon but the fact that the incidence of food allergies is increasing makes that need more urgent. Back as far as 1980, did peanut allergies exist, as far as we knew? DR ROB LOBLAY, ALLERGY UNIT, ROYAL PRINCE ALFRED HOSPITAL, SYDNEY: They were very rarely reported so it was something that didn't appear on the radar screen until the late 1980s and that was when the first deaths started being recorded in North America. HELEN DALLEY: Just why food allergies are on the rise is still uncertain but scientists believe that, along with a genetic predisposition, the so-called "hygiene theory" has much credibility. In other words, urbanised societies are too antiseptic. DR ALYSON KAKAKIOS, ALLERGY DEPARTMENT, CHILDREN'S HOSPITAL, WESTMEAD, SYDNEY: Industrialised, Western societies have become too clean. The immune system relies on exposure to certain microorganisms, bacteria, from birth onwards really and that when those influences are lacking, the infant's immune system lacks the ability to form the type of immune responses that would protect them from the development of allergic diseases. HELEN DALLEY: Studies also show city children have much higher incidence of allergies than children from rural communities, particularly farms with animals. DR ALYSON KAKAKIOS, ALLERGY DEPARTMENT, CHILDREN'S HOSPITAL, WESTMEAD, SYDNEY: They're exposed to a greater variety of micro-organisms earlier on. They're much more likely to be playing around in the dirt and also probably it comes also from the maternal microflora that they inherit because their mothers have also obviously been in the farming environment. HELEN DALLEY: Another piece of the puzzle — you need exposure to the potential allergen. DR JANE PEAKE, PAEDIATRIC IMMUNOLOGIST: Now, this might occur when your mother is pregnant with you, during breastfeeding or in early childhood but it needs to be at a time of your developing immune system. DR ROB LOBLAY, ALLERGY UNIT, ROYAL PRINCE ALFRED HOSPITAL, SYDNEY: Probably the most important one, we suspect, is the presence of the food proteins coming out in the breast milk and we think that women have been eating more peanuts and other nuts in the last 10 or 15 years than they used to. HELEN DALLEY: But while the scientists are still grappling with the reasons, governments and the community must deal with the reality. MARIA SAID, NATIONAL PRESIDENT, ANAPHYLAXIS AUSTRALIA: It's really about anaphylaxis being acknowledged as a public health issue just like asthma or diabetes. Anaphylaxis is the new kid on the block but it's serious and we really need to work together to help minimise risk. HELEN DALLEY: But with no uniform public health policy in place, every day hospital allergy clinics are dealing with the growing numbers of children suffering this affliction. These food allergic kids are being tested in a safe hospital environment to check how reactive they still are. Joel and Sam start having an allergic reaction with just a tiny taste of the allergen. The boys' immune systems start to go into overdrive believing the allergens are enemy invaders, their bodies launch a major defensive reaction, releasing masses of chemicals into their tissues, causing inflammation and other symptoms. Moderate reactions might see a child with itchiness, hives and nausea but other children can experience full anaphylaxis with dangerous loss of blood pressure and passing out. In the most severe cases, the airways swell, causing respiratory failure unless given adrenaline. The rise in food allergies has implications not only for governments but for schools, childcare centres, food manufacturers, the restaurant trade, even family kitchens. In other words, anyone who offers a safe environment where food is eaten. DR JANE PEAKE, PAEDIATRIC IMMUNOLOGIST: When there is somebody who could potentially have a life-threatening reaction, that isn't something that we should be acting like the family are overreacting or being overprotective of their child. We should appreciate it for what it is and to protect that child from harm or from problems. MARIA SAID, NATIONAL PRESIDENT, ANAPHYLAXIS AUSTRALIA: My concern is that we'll have a fatality like we have had, sadly, in NSW before NSW moved on with the development of guidelines for the management of anaphylaxis in schools. It shouldn't have to take the death of a child. HELEN DALLEY: Although too late to help him, Hamidur's death did force the NSW Government to act. Previously, NSW health and education departments failed to agree on an anaphylactic policy for schools. Hamidur's death forced their hand but it still took almost two years before guidelines for all NSW schools were published. But the problem is the guidelines are not mandatory and it's left to each school to implement them or ignore them. Leanne Benson's daughter, Bronte, is so allergic, she just needs to touch or taste any nut to have a reaction. Such sensitivity terrifies her mother. What would be your greatest fear? LEANNE BENSON: Collecting her from school in a box. HELEN DALLEY: So you think about that? LEANNE BENSON: Every day she goes to school. Every day. HELEN DALLEY: In Bronte's first year of school last year, she had three serious anaphylactic reactions. LEANNE BENSON: The last one was the last day of term, last day of school and she was rushed to hospital in an ambulance. Now, we can only pinpoint it to one of the other children bringing in a box of chocolates. HELEN DALLEY: But Leanne feels Bronte's school still doesn't take it seriously enough. Despite assurances that all teachers are trained to use an EpiPen, when Bronte was in crisis, Leanne claims no-one used it. LEANNE BENSON: She has an EpiPen with her at the school. HELEN DALLEY: Did anyone administer it? LEANNE BENSON: No-one administered it which was really annoying. If in doubt, just give it to her because it will save her life. HELEN DALLEY: The school did stop selling peanut butter sandwiches but Leanne feels the onus is still on her to protect her daughter. LEANNE BENSON: The school has asked me to do their policy for them. The school has asked me to do their management plan for them. HELEN DALLEY: How do you feel about that? LEANNE BENSON: Let down. And I expect my child to be in a safe environment but they can't provide that for Bronte. HELEN DALLEY: Brisbane's Brinckman family admit they were blase about little Sam's allergies to peanut and egg until they nearly lost him when he ate a skerrick of pavlova. RICHARD BRINCKMAN: There was the time we needed — he was gone. He had completely stopped breathing. It had been a long time. Blue's not the right word, he was purple. And then he came back and it was only due to that EpiPen. HELEN DALLEY: The adrenaline saved him but as Sam approaches school age, Tracey and Richard say they're filled with fear. RICHARD BRINCKMAN: We've been talking to principals and that of schools who all say they'll do their best, they have other children there with allergies and that sort of thing but there's nothing they can really guarantee you. They can't tell you that nothing's going to happen. "He may die here," was actually the words they used. TRACEY BRINCKMAN: I'm terrified. If Sam's sitting there and there's a kid beside him that says, "Hey, mate, do you want a piece of chocolate ?" He's still only five and he's a kid and the thought that if he takes it, it could kill him, in reality. HELEN DALLEY: While home schooling has been suggested to them, they don't think Sam should have to miss out on mainstream school life TRACEY BRINCKMAN: I think schools probably need to look at it a bit more seriously because the illness that Sam has is a serious one. HELEN DALLEY: Kelly Markham says her daughter Chantelle suffered an anaphylactic reaction causing her to stop breathing just 10 minutes after tasting egg. She had to be revived by adrenaline from an ambulance officer KELLY MARKHAM: Absolutely terrifying to hold your child in our arms while she's basically dying in front of you. It's just terrifying. HELEN DALLEY: So when Chantelle was starting preschool in Brisbane, Kelly began preparing to make the whole centre safe for her daughter. KELLY MARKHAM: Basically it meant no egg sandwiches. No biscuits containing egg or egg white, no mayonnaise, sticky things like that. HELEN DALLEY: That might have egg in them? KELLY MARKHAM: That might have egg in them. HELEN DALLEY: While most parents and centre management were fully supportive, Kelly was shocked by a couple of parents' reaction to being asked not to bring egg to the preschool. KELLY MARKHAM: I actually copped quite a lot of abuse. HELEN DALLEY: Really? What sort of abuse? KELLY MARKHAM: Just that I was neurotic and, you know, like I actually tried to explain to this woman what may happen to my child in an anaphylactic reaction and she said to me, "You don't need to lecture me on death," I was terrified that, you know, another mother that didn't understand would cause a reaction in my child and with anaphylaxis you never know if that reaction's going to be fatal. HELEN DALLEY: Sheena Cole did manage to find some Sydney preschools and schools who are now stand-out role models on the management of anaphylaxis in schools. SHEENA COLE: It tended to be, and it's got to be, I think, a real collaborative effort so it really was a matter of me working with the school at all times. HELEN DALLEY: Her daughter Courtney had allergies to fish, nuts and egg. So with full support from SCEGGS Darlinghurst Primary, Sheena helped the school become a safe environment. LIZ CUMMING, PRINCIPAL — SCEGGS DARLINGHURST PRIMARY SCHOOL: Anaphylaxis is — there is nothing wrong with this little girl, she just has a condition that we need to care for her just like many children have special needs and we always do our best to help them. SHEENA COLE: Really it's not just the staff and myself, it's the other parents as well. LIZ CUMMING, PRINCIPAL — SCEGGS DARLINGHURST PRIMARY SCHOOL: We sent that letter to all the parents in the school, from kindergarten to Year 12, explaining why we were going to be peanut butter-free and pure nut product-free. Out of the over 850 parents, I received one phone call only. That was from a dad who actually questioned the right of the school for us to be telling them what their children could eat. When I explained that the right of the school was that we had a right to make SCEGGS a safe place for every child who comes to the school, he absolutely understood and I thought one parent out of 850 plus was pretty good. HELEN DALLEY: NSW state school Coogee Public also believes it has a duty of care to provide a safe haven for food-allergic children. LYNDA WARD, RELIEVING PRINCIPAL, COOGEE PUBLIC SCHOOL, SYDNEY: The photos are in each classroom, in the canteen, in the office, all over the school so that the children are easily identified. Each child has a medication bag in the classroom but there's a duplicate supply of whatever they need in the office so that wherever they happen to be, if they did have a reaction, the medicine — the medication is accessible. HELEN DALLEY: Coogee Public has no less than eight allergic children who all need individual management plans with all teachers and carers understanding who they are and what needs be done in an emergency. LYNDA WARD, RELIEVING PRINCIPAL, COOGEE PUBLIC SCHOOL, SYDNEY: At school, there hasn't been an incident that's required medication. I think it's a lot of good management. It's probably a little bit of luck thrown in there as well but certainly it's because we've faced the problem head-on and dealt with it in a very pro-active way. HELEN DALLEY: So do you think it's just imperative for schools to treat this as a very serious issue? LIZ CUMMING, PRINCIPAL — SCEGGS DARLINGHURST PRIMARY SCHOOL: Definitely. I also think we don't have any choice in the matter. What would you do if a child has a reaction at school? Something has to happen immediately. There isn't time to call parents or for parents to come in to administer any medication so I see it as something where we have no choice. HELEN DALLEY: But as the education system tries to play catch-up, the health system is struggling to cope with the growing needs of anaphylactic children. DR ROB LOBLAY, ALLERGY UNIT, ROYAL PRINCE ALFRED HOSPITAL, SYDNEY: I think the allergy services are going to be strained, severely strained as a result. All my adult colleagues I don't think fully appreciate this because they haven't seen the children coming through the system who are going to be seeing them in a few years time. So I don't think they're fully prepared for what's going to hit them — a tidal wave of children coming in their direction as teenagers with peanut allergies. HELEN DALLEY: At least NSW, Victoria, SA and WA have public allergy clinics for proper diagnosis and testing in several hospitals but in Queensland, resources are in dire need. DR PETE SMITH, PAEDIATRIC IMMUNOLOGIST: There are no allergists working in public hospitals in Queensland. There is no public allergy clinic. There is no training opportunities for general paediatricians to learn allergy or even specialists in skin conditions, respiratory conditions. It's a disaster amplifying itself for future generation. The black parts show the airway and this is airway here. This is a bit of the vocal cord, it's all swollen up here. HELEN DALLEY: Allergist Dr Pete Smith is one of only two paediatric allergy specialists servicing the entire State of Queensland. DR PETE SMITH, PAEDIATRIC IMMUNOLOGIST: That's shaking as a result of an allergic reaction. There's a desperate need for basic infrastructure because nothing exists. The Government is being lobbied and so far it's shuffling papers without action. HELEN DALLEY: With no public services, that means long waiting lists to see the two private practitioners. DR JANE PEAKE, PAEDIATRIC IMMUNOLOGIST: My waiting time's over a year and I think I'd be horrified — HELEN DALLEY: That's appalling. DR JANE PEAKE, PAEDIATRIC IMMUNOLOGIST: I think I'd be horrified if I turned up to get a doctor's appointment and I was given one for a year's time. Patients come and see me from all over the state of Queensland. I also have some from the Northern Territory and from northern NSW and a lot of families ring and just express how desperate they are to see a specialist in this area. HELEN DALLEY: So what do you think needs to be done about that? DR JANE PEAKE, PAEDIATRIC IMMUNOLOGIST: Well, I think that the most important thing is to train more people that can provide serves. HELEN DALLEY: Parents of anaphylactic children are urgently calling on the Queensland Government to act. KELLY MARKHAM: We desperately need specialised health resources for allergies and people with anaphylaxis. They desperately need a public allergy clinic set up in the hospitals of Sydney and Melbourne. And there needs to be really a public education campaign about anaphylaxis as well. HELEN DALLEY: For families with severely allergic children, it's not just about coping with the condition but managing their whole lifestyle. Many families report they miss out on simple pleasures like eating out or playing with friends in order to stay safe. This weekly play group with all allergic children is one activity the mums know is food safe. KATE CHAPLIN: This is completely out for my family, all of these dairy products. HELEN DALLEY: Even food shopping can be fraught. KATE CHAPLIN: No cow's milk, no nice creamy desserts. HELEN DALLEY: Checking every label and dismissing goods containing an allergen. KATE CHAPLIN: Can you put that away for mummy, darling? HELEN DALLEY: Kate Chaplin's 7 year-old, Justine, is allergic to egg, dairy, sesame seed, banana, latex and nut. So at seven, has Justine ever had a milk shake? KATE CHAPLIN: No. HELEN DALLEY: She's never had ice-cream? KATE CHAPLIN: No. HELEN DALLEY: She's never had a boiled egg? KATE CHAPLIN: No! HELEN DALLEY: And certainly she doesn't have nuts. KATE CHAPLIN: Or chocolate. HELEN DALLEY: So she's missed out on a lot of those normal foods that kids eat? KATE CHAPLIN: Yes. HELEN DALLEY: Kate has educated all those close to her but most of all she needs to educate Justine about what might be ahead with her. KATE CHAPLIN: My issue is my daughter's life and my issue is having her grow up and be a member of society that can contribute something safely and have a long, happy life. She's got so much love to give. I want her to enjoy life and that worries me. HELEN DALLEY: There is some good news. Many children will grow out of most allergies by the end of primary school although figures show 80% of children with peanut allergy are not so lucky and will live with it forever. But Sandra and Greg Healy have no such optimism. Their daughter Corinne's future was wiped out by anaphylaxis. SANDRA HEALY: You know, it's a silent killer, I suppose and when mothers are crying out for help for the teachers, for their friends, for their friends' mothers, for everyone — that they're not being paranoid. They are actually trying to look after for their children and it really is hard for the mums to let go. HELEN DALLEY: So too, Cheryl and John Whitburn's teenage son Johnny who died of an anaphylactic reaction soon after mistakenly eating a bit of satay sauce. CHERYL WHITBURN: I'm frightened when these kids, children which are young now, are all going to become teenagers in the next five or whatever years and they're going to get out of their parents' sight. Now, if they're warned and they're told how dangerous it can be, they have a chance. But they need to be told. HELEN DALLEY: Shane Townsend and his daughters also robbed of a loving wife and mother who now lives in a wheelchair, severely brain-damaged thanks to a touch of peanut she ate at a restaurant. SHANE TOWNSEND: It's just been too hard. It's too hard watching the way she is. It's too hard watching the way my children react when she's there. And watching my in-laws grow old before their time. Sorry. HELEN DALLEY: And Siddiqur and Rokeya Rahman who feel they face a bleak future indeed without their little boy to share it. SIDDIQUR RAHMAN: I want to know what the truth is. I want to know the truth, the story. Doesn't matter whose fault was it. I want to know. The second thing I want to know — no parents suffer like me. HELEN DALLEY: All these families ask for is more compassion and above all awareness. They say their children and loved ones, whose lives were cut short by anaphylaxis, are owed nothing less. Click here for a printer-friendly version. |
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