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Standing Committee on Law Amendments Comité permanent de modification des lois August 29, 2019 Not finalized / Non finalisé le 29 août 2019 004 10:02 (The fourth meeting of the Standing Committee on Law Amendments was held in the Legislative Council Chamber on Thursday, August 29, 2019, at 10:02 a.m. Members of the committee are: Hon. Mrs. Anderson-Mason, chairperson, Mr. Northrup, Hon. Mr. Stewart, Mr. Fitch, Mr. K. Chiasson, Mr. D. Landry, Mrs. F. Landry, Mr. McKee, Ms. Mitton, Mr. DeSaulniers. Substitutions: Ms. Rogers for Mr. D. Landry, Mr. Savoie for Hon. Mr. Stewart.) Madam Chairperson: I would like to call this meeting to order. Welcome to Day 3 of the public hearings on Bill 39. Again, I will remind everyone that there are interpretation devices at the back of the room over here. They are not just so that you can hear the proceedings in the language of your choice but also they will assist you in being able to hear the evidence that is being provided and the questions being asked, because sometimes, it is more challenging for the people who are sitting at the back of the room. That being said, we are actually missing eight devices, so if anyone has taken any home, please feel free to return them. It would be greatly appreciated. Mention that to your family and friends who are not here today. Please refrain from photography and recording of the proceedings. Please also refrain from applause. This is not the appropriate place for that to occur. It does not occur in courtrooms nor in the Legislature, and it should not be occurring here. (Interjections.) Madam Chairperson: I think that is debatable. We will begin today with Lily Smallwood. I welcome you here. I will remind you that we have allotted 30 minutes for you to give your information. I do highly recommend that you allow us some time to question you, as I think it is of value. I will warn you when you have reached the 20-minute mark, but really, it is up to you how much time you take to present the information that you want to give us today. Thank you. Please give yourself an introduction for the record. Thank you very much. 005 10:05 Lily Smallwood Ms. Smallwood: Good morning. I want to start by thanking you for the opportunity to speak with you today. I know you have been hearing from many doctors and experts on this issue over the past couple of days, but I come to you today as simply a New Brunswick mother, a 1/106 Standing Committee on Law Amendments Comité permanent de modification des lois August 29, 2019 Not finalized / Non finalisé le 29 août 2019 community volunteer, and a passionate fighter for the safety of my children. I will not offer you endless studies, theories, or statistics. I simply want to share with you our journey, the struggles we now face as a family, and the difficult decisions being thrust upon us to protect our children. I will tell you truthfully what it is like to be the mother and real-world protector of medically vulnerable children. You see, I was not always a fighter for my kids. I did not have to be. When my first child was born, we experienced the same level of love and awe that I am sure many of you felt when holding your child for the first time. I remember the weigh-ins and checkups, and of course, I remember the vaccinations. They were just part of the routine. Having in-laws who are doctors and a father who is a pharmacist is quite handy for a first-time mother. We did not need all the baby books when we had a family physician on speed dial. When it came time for vaccinations, there was not much research necessary. We wanted to protect our baby as well as the community around us. We wanted to do our part as good parents and good citizens, so our first child received his shots. Even from the beginning there were reactions, but nothing drastic at first. He just got sick shortly after, and it was just a coincidence. That is what we were told, and we believed it. After his third round of shots, he got really sick and ended up in hospital. Again, we were told it was just a coincidence. Even so, I did not give him another shot for a year. He continued to struggle with his weight gain and growth. Even today, at 13, he still has not managed to get back on the growth chart. With our next child, I admit, I was a little more hesitant. He followed a slightly delayed schedule and had some minor reactions—just coincidences—but he did have all his shots before starting kindergarten. For my third child, I felt differently. I could not fully say why, but on the morning of the appointment for his vaccinations, I felt a serious sense of dread. I remember my husband talking me into it in the parking lot, saying it would be okay. Our sweet baby, Tally, was about a year old, and he really was just a beautiful child. I did not want to face even the slightest chance that something would happen to him, but I also wanted to do the right thing, the thing we are supposed to do, so in I walked to the Public Health office. That appointment changed our lives. Within the next couple of weeks, our son’s skin became covered in eczema, and it steadily became worse. I am not talking about your typical eczema here. I am talking about a child who, from then on, lived in only white cotton washed in the mildest detergent, was given prescription creams for his medical condition, and started a restricted diet, yet still, he was covered head to toe in bleeding, extremely itchy spots. I remember once standing in my driveway one day, crying in public, as blood seeped through the back of his white pants. Tally cried, and I cried. But it was just a coincidence. Still, we went for our next appointment. He had his next shot eight months later, and within the next couple of weeks, his ankle swelled and he cried in pain. We thought it might be an allergic reaction, but the Benadryl did nothing to ease the swelling. The anti-inflammatories eventually helped, and after a time, the swelling subsided. It was brushed off by doctors as just another coincidence. At this point, the coincidences were piling up and I decided, once again, to take a 2/106 Standing Committee on Law Amendments Comité permanent de modification des lois August 29, 2019 Not finalized / Non finalisé le 29 août 2019 break from shots, though, by now, it was too late for my son. His downward spiral was well underway. I cannot fully explain to you what it is like as a mother watching your beautiful child experience challenge after challenge. By the of age of 3, he felt like a medical mystery to me, strangely reactive to everything. It seemed to culminate in episodes of sudden-onset fevers that led to seizures. Tally would suddenly say he felt unwell and then lie down, and we would find him seizing. Nothing is scarier than seeing your child seize, vomit, and start aspirating his vomit with clenched jaws. I cannot tell you how hard I tried to pry his mouth open, trying to hook out the vomit that was going into his lungs. I cannot tell you how hard I prayed. I cannot tell you exactly how it felt to sit there helpless as the firemen and paramedics arrived to suction him and transfer him to the ER by ambulance, and then, in the following weeks, I cannot tell you how hard it felt to sit there in the pediatrician’s office and be told he was a perfectly healthy boy, that the reactions were really just coincidences to something in his environment. 006 10:10 Within a couple of months, Tally stopped walking due to severe swelling in his joints. After spending an entire summer in and out of the emergency room, after rounds of tests and procedures done in search of an answer, it was at the end of August that we finally got it, a diagnosis for Tally. He has juvenile arthritis, an autoimmune disease. After vaccination, his immune system was triggered, and it just did not turn off. It was not just inflammation in his joints but also previously undetected uveitis, which is an autoimmune inflammation in his eyes. The uveitis was not caught soon enough, so he was already suffering from corneal scarring on one side. That fall was a flurry of trips to the IWK in Halifax every month for a barrage of treatment plans that all failed and brought us to where we are today—a child who takes weekly immunosuppressant medications. He is one of those vulnerable children that Bill 39 is aiming to protect. I have told you about my first child’s reactions, as well as my third son’s long journey, and I would like to tell you now a little bit about child number two, who seemed to tolerate his shots okay. Well, he became sick last year. He started passing blood. He became pale and eventually severely anemic. Once again, the path to a diagnosis took months, months of frustrating tests and treatments before finally being referred onto the IWK yet again and eventually identifying what was wrong with him—Crohn’s disease, another autoimmune disease.

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