Happy 2nd Birthday!

Well here it is Matthew. You are 2 years old today. How odd that at the same time it was only yesterday you were born, to feeling like a lifetime ago. As we prepare for your party, I am taking a few moments here and there to convince myself that you truly existed. A part of my brain is telling me that maybe you were a dream. Is that my brain protecting me? I am unsure. But it scares me. I want to remember everything about you. We have been thinking of your birthday for the past month. The kids’ excitement has been building up with planning and executing your special day. They have been talking about you much more than usual which is quite pleasing. I love how you are an active member of our family. They have been working diligently on your wish lanterns. We picked out your cake. And they made the decision that today we will take it easy. No school so they don’t get distracted. They have also been excited for today. But this morning, it seems a little more sombre than usual. Yes, they are excited and yes they are talking about you a lot. But there is sadness in the air. I am hearing more “I miss Matthew” today. You not being here has left a great hole in our family. But we look forward to this evening when we go to the lake to send off your lanterns. As the kids look for your star, please shine brightly for them.

I have been feeling pretty good the last couple of months. Yes, we have been dealing with the health concerns of your soon to be born little brother. But we get so much optimistic information that keeps sounding better. Maybe you are lending a hand in the miracles we recieve? I can only tell myself so. But at the same time, I realize that I am getting through okay as I start each day the same. When I wake up, I ask God to help me get through today. I do not ask for more. That is as far ahead as I can work towards. Your second year has proven much more difficult since the reality of your departure is much more real. I am seeing other 2 year olds run and laugh and play and I’m saddened at the same time watching them makes me happy. Sad that you are not reaching these milestones. But happy as I see where you would be and it helps keep you real in my heart. I have been well for the most part and have been so excited for today. I thought I would be fine. But alas, this morning I have awoken and feel very heavy and slow. My brain feels cloudy and overburdened. Tired like. I just have this void weighing down on me. I am going through my day, but I just don’t feel up to being normal. I can only imagine that every February 21st for the rest of my life will feel this way. I don’t like it, but I have no other choice. If I did, you would be here. I think the reason I am holding myself together as well as I am today, is that I believe God has spoken to me through todays daily devotional:

“Yes, the great miracle remains: that, small and weak, we can bring love into this world. Through us, God can speak.”

You Matthew, are a miracle. And I believe you brought love into this world and let God speak to me through you. I will never forget the beautiful gift you are. Happy birthday my special little boy. I love you more than I could ever express in words. My heart overflows for you. Have a great party in heaven.

All my love,
Mommy

The New Baby

It has been 3 months since I’ve posted, but not because I’ve forgotten or have been too busy to think of my children. In fact it’s because I have been so busy thinking and hurting for my children that I haven’t been able to write. Grief does funny things to the brain and causes thought processes not to work too well or to even be organized. I have been basically having enough energy and skill to get myself out of bed and to just get myself through the day without falling apart.

In the time since my last post, Jacob has had many visits to BC Children’s Hospital having extensive testing done to see why he suffers cyanosis. After many days at the hospital, we are still left with unanswered questions, but relief that it is nothing life threatening. His heart is fine. His lungs are fine. They basically attribute this to his autonomic nervous system. I am not sure exactly what this means. I am hoping that at call back they will be able to tell us more. But what I do know is, is that he is safe and can have anaesthetic and that’s all I can ask for right now. He still has cyanotic episodes, but he’s not in danger and that is an answer to my prayers.

Also in this time, I found out I was pregnant. All of us at home here have been so happy, although our happiness has had an underlying anxiety that is totally expected. We tried to focus on the positives. We got ourselves a Doppler so that I and the kids can have relief when we hear that beautiful heartbeat. We all thanked God. We believe that Matthew and Simon have been a thorn in God’s side in asking to send us another child. Although this joy is much needed in our family, I have still struggled with much depression as well. I belong to a world where children die. I know I have no control over it, but my worries are there. Every day I over worry about my living children and have fears about this one in my womb. My counsellor told me not to be pessimistic but to be joyous right now with the good news. But in my world, I can’t help but doubt. She has told me the same things during my pregnancy with Simon and that things would be good. But of course, that did not happen. So until I reached 19 weeks, and felt this child move within me, I found it difficult to be optimistic. After this point, I did allow myself to feel optimistic. Along with optimism came guilt for feeling such happiness when I also hurt and miss my boys. But I am a determined person to once again find happiness.

Unfortunately, my optimism has been short lived. At 20 weeks, we went to the ultrasound to see our little baby suck its fingers, kick and swim around. The kids were laughing with joy and I was in tears at seeing such a perfect, healthy little baby with a heartbeat and everything. But because of Matthew and Simon, the doctors wanted to be extra vigilant with this one to help us cope with our anxieties. They are trying to give us the best care. When during the ultrasound and the technician couldn’t get the baby in the right position to get a clear look at the heart, she asked me to come back later and see if baby has moved in a better position. When the doctor called back and said my ultrasound would be at BC Women’s Hospital in 4 days, I got nervous. They told me nothing so my brain filled in the blanks. And let me tell you that my brain can think of such horrendous things.

The ultrasound took a long time in Vancouver. And how could I possibly stay optimistic when cardiologists, geneticists and perinatologists hovered over the ultrasound technician asking her to go over the same area over and over. We were informed that my perfect little baby has a heart defect known as Transposition of the Great Arteries – Type D. And as long as baby is inside me, baby is perfectly safe. I give baby clean blood. But after birth I am to expect a blue baby with breathing difficulties (not again!). Within baby’s first few hours of life, it will receive a Septostomy to help some clean blood mix in with the dirty blood so baby has a fighting chance. Within baby’s first week of life, it will receive open heart surgery to repair its condition. The arteries in the heart are backwards. They will switch these arteries and close off the hole they made in the septostomy. It will take about 8 hours of surgery. Baby will then spend about a week in the cardiac NICU to heal and watch for problems and infection. The survival is about 90 – 95%. Those odds sound so good, but when you’ve gambled such as we have and lost with worse odds (0.1% for Matthew), it’s hard not be extremely scared.

I am trying to focus on one day at a time. I know that I have to plan to move to Vancouver for 2 months. That in it will be very stressful. I want to bring all my kids because I want things to be as normal as possible for them given the circumstances. They have been traumatized enough in the last almost 2 years that I can’t make it worse by leaving them for so long. I would also like them to meet their new baby before surgery, just in case. Also, I need to keep things normal as long as I can as I cannot have time alone to just think. I need lots of distraction and keeping busy to keep myself from falling apart. That’s how I’ve coped since Matthew died. I also know, that with all these concerns and a child with health problems is going to force me to put my grieving of Matthew and Simon on hold, and I already feel very guilty about that. How can I not have time to miss my boys? Of course I will miss them and hurt for them, but I know I will be too busy dealing with this child and upcoming serious medical issues for awhile that I will not be able to focus so much time to them. That thought just pains me. But reality right now is that I have to do it. Will they know I still love them and miss them?

Amery has come across some people who believe that even though I’ve been clean of my antidepressants for a year that they could be responsible. That they may have affected my eggs. That is something we could never prove and I hate to think that these drugs are still causing me problems. Could it be possible then, that any future children could still be affected? We are told that TGA is a random thing and we could not have done anything to prevent it. To think my eggs have been damaged would make me afraid to have any more children. I don’t know if I’m finished yet. But to have worries like this with every pregnancy is an overwhelming thought. I thought I was in the clear with this one since the pregnancy has been so easy physically on me when after starting my meds, they got dramatically worse every time. Is my life to continue on in stress and anxiety with my children and that this is what I have to look forward to for the rest of my life? I feel like I’ve lived my life as well as I could have. I have always followed God and prayed and kept my faith. That maybe he’s decided to test me. But these so-called tests feel more like punishment. Why? I see many women make bad choices that continue during pregnancy and motherhood and produce babies with no problems. Why do they get healthy children? Why do they go through life without real worries? Will there be great rewards waiting for me at the end? That’s all I have right now to go on. Hope. Without it, I am finished.

Here I am today, balancing on the edge of sanity. Wondering what I did so offensive to deserve such heartache. Hanging on to some minute level of hope that all this in the end will be worth it. Trying to focus on all the good my children bring me and keep trucking forward into the unknown bliss of the future. With all my efforts clinging on to getting through each day moment by moment, until the day God calls me home.

18 Months

After reaching the pivotal 18 month milestone, a lot of things have come up for me. Why is 18 months pivotal? That is how long we wait to space our children. Now would be the time to start trying again. Of course this time, we have been trying since Simon’s death. It has been such a roller coaster. I have let each period be a complete downfall and allowed them to let me feel like a failure. But a couple of months ago, I gave up trying and just focused on getting myself better and working on all my issues revolving around Matthew and also with my other boys as they have been exposed as well. I have basically decided to focus on getting the facts of these drugs out into the open seriously now. I have had to deal with the flashbacks much more frequently lately. I have kept my memories in a little box on a shelf in my mind. When I was ready, I would go somewhere private and open the box and relive my trauma of Matthew’s death. But for the past month or so, this box has opened itself and had me relive his final moments over and over when I am not normally ready or available to do it. I have found this much more traumatizing at these unexpected times. The memories start at his birth and continues to the end when the doctor says, “Call it.” I can’t stop the process once it starts. And because I am reliving the moment, the feelings are as fresh as the first time I am experiencing it. It is draining physically and emotionally as I have physical reactions as well as the emotional. I have found myself reliving in public. In front of my family. Also alone when I am not prepared. I must find somewhere to hide while I go through the loss again and work hard to calm myself down.

All this has made me realize that I must do whatever I can to make sure no other person has to go through this as well. I won’t be able to stop all of it of course as I realize there is just so much to fight to get the truth out. Many denials of patients and doctors as well as the drug companies. But I can do my best. That begins with getting Matthew’s story told. To reach more and more people. To get the facts out that not only Matthew have been affected, but the long term damage to my other exposed children and myself as well.

I travelled to Vancouver to Women’s Hospital last week to speak with a neonatal specialist about my boys. He works with many problem deliveries and births. He agreed that the first step to saving Matthew would have been recognizing respiratory distress. We told him what we saw as his parents and he agreed it was clearly distress. Why the doctors didn’t reconize it was probably because they don’t see this very often and they are probabaly not properly trained. We told him that Cole was born with a heart murmur. As a doctor, he would have recommended his heart checked again a few years later. We were not told that and now at 8 we must ask that his murmur get checked again. Andrew’s severe sleep apnea at 3 must also be checked out as well as any breathing problems could be attributed to Effexor exposure. As for Jacob, we described his traumatic birth and the first couple weeks of life followed by his problems to this day. His cyanosis when he’s stressed. He told us Jacob should have been under the care of a cardiologist. Which now at 6 we must do. He may have a small hole between his chambers that allows blood to pass back and forth which could worsen when he’s upset and cause his cyanosis. I am praying he doesn’t but I have to prepare that he might. It could require surgery.

We also spoke to Barbara Mintzes at UBC who put out the Therapeutics Initiative letter in February 2010 that antidepressants are not safe during pregnancy. She and her colleague were wonderful. And I appreciate the fact that all their studies have absolutely no funding whatsoever from a drug company. Their Conclusions and clinical implications stated, “There is no evidence that SSRIs in pregnancy improve maternal or infant health, and substantive evidence that they pose a risk to the fetus. Thus the harms exceed the benefits in this setting.” She has agreed to help us get in touch with journalists to help get Matthew’s (and my other boys as well) out to the public. They do recommend that all our boys be put on the adverse reactions list. I am working on that by getting the boys to a cardiologist. That is my first step.

http://ti.ubc.ca/letter76

The pathologist who did Matthew’s autopsy put Matthew on the Adverse Reaction list. As of April 16, 2009, Matthew has become the first infant death caused by exposure to Effexor. Of course we pushed to find out what caused his death instead of settling for “some babies just die.” Most parents accept that, so their deaths never get diagnosed and these killing drugs continue on their merry way to harming more people. If more complete autopsies were performed and the fact that the mom was using antidepressants is crucial, how many more deaths or ther adverse reactions would be found linked to the meds? The numbers could be astounding. The fact that a lot of Cole’s behavioural problems are identical to my cocaine exposed nephew is not a coincidence as SSRIs are almost chemically identical to cocaine. That is an adverse reaction! Instead, these behavioral problems are chalked up to ADHD or some other condition that doctors want to medicate. Jacob has been diagnosed as well by one doctor as ADHD and his pediatrician wants him on Ritalin. My boy potentially has a heart condition as cyanosis is a sign. And she ignored his oxygen problem and wants to medicate him with an Amphetimine? I’m not a doctor, but you give an amphetimine to someone with a heart condition and you could kill them. How can a system continue on this road of distruction?

So as of today my mission is to help others avoid my situation. I have asked Matthew and Simon to help guide us and I believe they have these past few months by opening many doors for us. I have learned so much and met many wonderful people. I am now awaiting to see where all this leads us. I will fight the best fight I can give for my boys. I am their mother and I owe it to them.

My Child’s Killer.

Matthew’s death is consistent with PPHN. So what exactly is PPHN? It all has to do with the change-over from womb “breathing” to air breathing.

In the womb, the lungs are not needed to exchange oxygen because the placenta supplies the baby with their oxygen through the umbilical cord. So the blood, bypasses the lungs altogether and the blood goes directly back to the heart through a fetal blood vessel called the ductus arteriosis.

In a normal circumstance, quickly after birth when the baby begins to breathe air, the circulatory system adapts and changes. The air that the baby breathes in, changes the pressure in the lungs as the lungs inflate. The result is the ductus arteriosis permanently closes. Now the blood returning to the heart from the body can be pumped to the lungs where oxygen and carbon dioxide can be exchanged and the oxygen rich blood can be pumped back to the body.

In a PPHN baby, the “switch over” doesn’t happen. The ductus arteriosis stays open and the blood continues to bypass the lungs. Even with the baby breathing, the oxygen breathed in will not reach the blood stream. Because the blood bypasses the lungs, where oxygen and carbon dioxide are exchanged, the body is getting unoxygenated blood back. This is known as persistent fetal circulation (PFC).

Since the baby’s circulation has not made its normal transition and pressure in the lungs increase, it causes distress. Without oxygenated blood being able to be brought to areas of the body that need it like the brain, kidneys, liver and other organs, these organs also become distressed due to lack of oxygen.

Some signs and symptoms include rapid breathing, rapid heart rate, respiratory distress and cyanosis. Unfortunately in Matthew’s case, we as his parents noticed these signs and were ignored and the staff made excuses for them. His cyanosis was due to facial bruising. His problem breathing and struggles were completely ignored. They didn’t bother to check his heart rate or oxygen levels. And in the process, his distress was finally treated with CPR for 20 desperate minutes that had no effect on his problems. The nurse administering CPR only continued to pump unoxygenated blood back throughout his body and not fixing the problem. Their way of helping, only helped to kill him.

One main way a hospital can check an infant for PPHN is to use a pulseoxymeter. This checks the oxygen levels in the blood. They did not do this even though Amery and I counted at least 6 unused, fully charged machines on the floor.

Nitric Oxide inhaled by the baby with PPHN has proven to have a high success rate in causing the much needed circulatory change over. But, of course if the staff is denying there is even a problem, this would never be considered.

Even with treatment, infants can experience shock, heart failure, brain haemorrhage, seizures, kidney failure, organ damage, and death. About 20% of babies with PPHN die. And those that do survive can have long term problems. Including breathing disorders, seizures, developmental disorders and hearing loss.

This all boils down to risk factors. One of which being, that SSRI/SNRI are factors that increase these risks and must be taken seriously. The FDA Patient Information Sheet on Effexor states that babies exposed in-utero suffer withdrawal symptoms which include agitation, insomnia, and feeding difficulties. Here Health Canada has given similar warnings. On July 10, 2006, the FDA issued a public health advisory that asked the makers of the drugs to change their prescribing information to include the risk of PPHN. Effexor is listed as pregnancy Category C. This has been out for 3 years when Matthew was born. And yet, every health care practitioner, mental health person, or any medical staff has never heard about it until we’ve brought it to their attention. These warnings and letters are not good enough. The government needs to make sure that when a health issue is warned, it needs to get to all the medical care persons. And that there should be some confirmation that these people have read them. Sure I understand that doctors would have so much to read. But we are talking about our health and lives. If there is much concern over a drug and that there are repercussions that are dangerous, then maybe they should be removed from the doctors prescribing list.

All hospital staff on a neonatal floor should be taught to recognize the signs and symptoms. And to be especially vigilant with babies whose mothers are on SSRI/SNRI’s. There is no excuse for this. When you go to have a baby, you have a medical file. It is written in the file under medication. I even told the specialist prior to Matthew’s birth that I was on Effexor and I had fears of his birth being similar to Jacob’s. She told me not to worry. She would be there (she wasn’t) and that she would read Jacob’s file (irrelevant if you’re not even there). I did worry anyway and my previous experience and words didn’t change the fact that refused to say something was wrong and do something to save his life. All I can do now, is to try to get this information out there, and correct those doctors that still believe that antidepressants are safe. It’s that complacency that killed my son. They are not safe and someone must be accountable to change the rules of the game. I hold the government liable to make sure Health Canada follows the rules and try to keep us safe. It’s a long shot in my lifetime, but I know I must try with everyone else screaming for a difference.

My child’s killer all boils down to Effexor exposure and medical negligence. So many warnings have been released. My past experiences and feelings of something being dreadfully wrong. Matthew’s poor colour and breathing. All caused by my Effexor prescription that was constantly viewed as safe during pregnancy. And his subsequent death happened because of the complacency of the staff that refused to listen to the parents and admit that these drugs are dangerous. Now Matthew is officially considered a statistic under Health Canada’s Adverse Reaction Database. The pathologist who did his autopsy has sent the results to Health Canada that a child has died due to exposure involving Effexor XR 1 hour after his birth.

Next Post

This was written by a Dad in Arkansas from the book, “This Little While”. It touched my heart with its truth.

Our baby was a gift to us and a great teacher.
We learned patience and compassion.
We were given a crash course in values -
things that once seemed so important
all at once became meaningless.

There was a new depth to our souls, our beings -
a learning
a wisdom
an understanding.

We would never be the same.
We had made decisions of monumental importance.
We had explained death to small children
with wide eyes and eager, pointed questions.

We ourselves had touched death -
death that came wrapped in a little blanket
with lambs and bunnies on it.
Death was not frightening,
it was soft and smelled of baby powder.

We discovered friends we never knew.
We discovered friends we thought were friends were not.
We learned we had to communicate with each other.
We learned we were very different
and exactly the same.

We learned how to let go and to go on.
All these things were taught to us by a teacher
who never spoke a word or taught a class
and who weighed exactly 7 pounds and 2 ounces

Ex manus capere

Ex manus capere. Latin for “to take out of the hand”. This is the phrase that the word Emancipation stems from.

Emancipation. In Canada the word does not have nearly the historical significance as it does for our American cousins to the south. A word that gave impetus to a paradigm shift in the human condition. A word that paved the way for all men, regardless of race, creed or religion, to truly realize their unalienable right to life, liberty and the pursuit of happiness.

June 28, 2010, very well might be a day in the annals of Canadian history, and perhaps the world, that 50 to 100 years from now will give people the same kind of reflection, stop and say, “Yup, that was the day.”

A day without too much worldly significance, there were no major terrorist attacks, or heads of state die. There were no major natural disaster of an Act of God scale(save one pesky oil spill in the Gulf of Mexico). And outside of being the anniversary of the death of two of my personal heroes( Terry Fox and Billy Mays), as well as US President James Madison, most of the people unlucky enough to die on that day, are largely forgettable.

June 28, 2010, will forever be a Red Letter Day on my calendar. And I believe it will also be for Rhonda and Neil Carlin. June 28th was a day, that 5 otherwise forgettable human beings, no different that you or I, made a statement. As a parent  who has lost a child, I have no doubt in my mind that the statement I speak of , could at least be partially equated to justice.

On June 28th, a jury of 5 ordinary people, not medical experts, not lawyers, just people, returned a verdict that took the cantankerous child that our present health care system is, and spanked it’s bare ass.

Although this verdict stops short of naming the killer of Rhonda and Neil’s baby girl Sara(Paxil and GlaxoSmithKline), it did a pretty dam good job of indicting the rest of the medical establishment that failed Sara, and thousands upon thousands of other Canadians. It should be noted that coroners and their subsequent inquests, pride themselves on being “fact finding not fault finding bodies”, and therefore cannot directly attribute blame to any particular party, be it individual or corporate.

However, what they can do, and did do in this case, was stand up and say where we have lost our way. They did not beat around the bush in returning with recommendations, that denounce the abhorent practices of drug manufacturers as well as those that we have charged with protecting the safety of those drugs.

Of the 16 recommendations that this inquest made, the 4 for me that have the greatest emancipatory potential are 10, 11, 15 and 16.

RECOMMENDATIONS TO HEALTH CANADA

10. In order to maximize the effect of Health Canada Advisories detailed drug-related adverse events, Health Canada should consider that the Health Advisories:
• Be succinct.
• Clearly set out the warning.
• Should clearly set out the body of evidence giving rise to the warning.
• Should be specific.
• Should be profiled in a way to attract the physician’s attention.

11. Health Canada, as a regulator of companies seeking drug approval, should make their approval contingent on receiving results of all clinical trials from the drug manufacturers.

RECOMMENDATIONS TO THE CANADIAN DRUG MANUFACTURERS’ ASSOCIATION

15. Drug companies should be required to report to Health Canada all serious adverse events associated with their drugs from all foreign jurisdictions within 30 days of the adverse event.

RECOMMENDATIONS TO THE CANADIAN FEDERAL GOVERNMENT

16. There should be an arms length body independent from Health Canada called the Drug Safety Board, which is solely dedicated to drug safety, which reports to Parliament, which is funded by the Federal Government and which receives no money from drug companies. Amongst its mandated responsibilities should be drug safety research, investigating adverse reactions and issuing warnings to the public and health care professionals and hospitals.

If these recommendations are truly adhered to and enforced, we will be well on our way to emancipation as a consuming public. Free from the oppressive, predatory, death mongering profiteers that market us happiness in a bottle.

If only the public policy makers that are charged with protecting the well-being of our families could see the blood-stained trail that Big Pharma leaves in it’s wake. I hope that day comes in my lifetime.

In honor of Sara Carlin, and the countless millions of victims of the poison for profit regime, including my own children, I am publishing the recommendations from Sara Carlin’s inquest, in their entirety.

1. The Ministry of Health and Long-Term Care (MOHLTC) should develop a Drug Information System. This system would promote:
• Patient safety in the prescribing and dispensing of drugs.
• Collection and compilation of data in a single repository for all drugs dispensed for all Ontarians.
• Research into drug and patient safety.

2. The Drug Information System should track and monitor all drugs dispensed in Ontario regardless of who is paying for the prescription.

3. The Drug Information System should collect, compile and release data upon request to scientists such as those studying population-based health outcomes at the Institute for Clinical Evaluative Sciences.

4. The Ministry of Health and Long-Term Care should commit to developing a province-wide suicide prevention strategy as has occurred in other provinces such as Alberta.

5. The objectives of the province-wide suicide prevention strategy should include:
• Enhanced mental health and well being for Ontarians.
• The education of the public to de-stigmatize mental health disorders, including depression and substance abuse disorders.
• Improving intervention and support for Ontarians affected by depression and substance abuse.
• Improving intervention and treatment for those at risk of suicide.
• Increased efforts to reduce access to lethal means of suicide.
• Increased research activities in Ontario on suicide, suicidal behaviour and suicide prevention.
• Improved suicide and suicidal behaviour-related surveillance systems.
• Inform and educate the media into strategies when reporting deaths due to suicide to prevent ‘copy cat’ suicides from occurring.

6. Strategies in the province-wide suicide prevention strategy should be humane, effective and evidence based, respectful of community and culture-based knowledge, inclusive of research, surveillance, evaluation and reporting and reflective of evolving knowledge and practices.

7. The ministry of Health and Long-Term Care of Ontario and Government of Ontario should commit to supporting the development of a national suicide prevention strategy for all Canadians.

RECOMMENDATIONS FOR THE ONTARIO COLLEGE OF PHYSICIANS AND SURGEONS AND THE ONTARIO COLLEGE OF FAMILY PHYSICIANS

8. The Ontario College of Physicians and Surgeons and the Ontario College of Family Physicians should develop practice guidelines and training to family physicians on administering and monitoring the use of selected serotonin reuptake inhibitors (SSRIs). Those guidelines should include, but not be limited to the following:

Prior to prescribing SSRIs the physician should:
• Give the patient a physical examination.
• Request laboratory investigations, including drug screen where appropriate.
• Inform the patient of the benefits and risks, inclusive of rare and serious side effects of SSRIs.
• Inform the patient of all reasonable alternative treatments.
• Inform the patient of the treatment plan should SSRIs be prescribed.
• Discuss with the patient alcohol and substance abuse as confounders in the illness.

B: Emphasize to physicians that best practice monitoring patients for drug-related adverse events arising from the introduction of SSRIs includes a regime in which the physician should monitor the patient with weekly visits for the first month, biweekly visits for the second month, and with a following visit in the third month. This effectively would monitor the period of time with the greatest risk for the development of serious drug-related adverse events.

C: Encourage physicians to utilize tools created to monitor both disease symptoms and adverse events of patients undergoing treatment with SSRIs. An example of such a tool is the SSRI Monitoring Form for Children and Adolescents developed in June of 2009 by the British Columbia Children’s Hospital in Vancouver, British Columbia.

D: Emphasize to physicians that while having due regard for the relevant health privacy legislation in the jurisdiction of the medical practitioner relevant to capacity and consent; patients undergoing treatment should be encouraged, repeatedly if necessary, to allow communication and engagement of family members, guardians and/or trusted friends by their treating physicians to ensure that the patient and their supports are aware of the nature of their disorder and the potential side effects of prescribed medications and can assist in the monitoring for adverse drug-related events.

RECOMMENDATIONS TO THE ONTARIO HOSPITAL ASSOCIATION

9. The Ontario Hospital Association should inform its hospital members that patients suffering with mental health disorders including depression, anxiety and substance abuse and attempted suicide may present for treatment to their hospitals and emergency department. While respecting the Personal Health Information Protection Act, 2004 every effort should be made to obtain consent from the patient to allow the release of the medical records compiled to the patient’s treating family physician.

RECOMMENDATIONS TO HEALTH CANADA

10. In order to maximize the effect of Health Canada Advisories detailed drug-related adverse events, Health Canada should consider that the Health Advisories:
• Be succinct.
• Clearly set out the warning.
• Should clearly set out the body of evidence giving rise to the warning.
• Should be specific.
• Should be profiled in a way to attract the physician’s attention.

11. Health Canada, as a regulator of companies seeking drug approval, should make their approval contingent on receiving results of all clinical trials from the drug manufacturers.

RECOMMENDATIONS TO REGULATED HEALTH PROFESSIONALS

12. All colleges legislated under the Regulated Health Professions Act, 1991 should require mandatory reporting to Health Canada by its members of serious drug-related adverse events as defined by Health Canada.

RECOMMENDATIONS TO THE PUBLIC HEALTH BRANCH OF THE MINISTRY OF HEALTH AND LONG-TERM CARE AND THE MINISTRY OF EDUCATION

13. These two ministries should develop an educational program regarding mental health and substance abuse for the adolescents and youth of Ontario’s school system. The circumstances of the death of Sara Carlin as presented at the inquest may be of assistance in the development of this program. The program should seek to inform the adolescents and youth in its schools that suffering with mental health disorders including depression and anxiety is common at their age. In addition the program should:
- Seek to de-stigmatize these illnesses.
• Provide information that these conditions are treatable.
• Emphasize the importance of abstinence from alcohol and other substances as utilizing these may contribute to mental health disorders and precipitate suicidal ideation and suicide.

RECOMMENDATIONS TO THE ONTARIO COLLEGE OF PHARMACISTS AND THE ONTARIO PHARMACISTS’ ASSOCIATION

14. When a prescription is filled the patient should receive a standardized and plain language information leaflet based on the product monograph. The information provided to the patient should include:
• What the medication is for.
• What the risks of taking the medication are.
• Under what conditions the medication should not be taken.
• Interactions with the medication.
• The proper use of the medication.
• Side effects and what to do about them.

RECOMMENDATIONS TO THE CANADIAN DRUG MANUFACTURERS’ ASSOCIATION

15. Drug companies should be required to report to Health Canada all serious adverse events associated with their drugs from all foreign jurisdictions within 30 days of the adverse event.

RECOMMENDATIONS TO THE CANADIAN FEDERAL GOVERNMENT

16. There should be an arms length body independent from Health Canada called the Drug Safety Board, which is solely dedicated to drug safety, which reports to Parliament, which is funded by the Federal Government and which receives no money from drug companies. Amongst its mandated responsibilities should be drug safety research, investigating adverse reactions and issuing warnings to the public and health care professionals and hospitals.

Medical Advances?

Why do we trust modern medical practices? Each of my grandparents lived well into their late eighties, experiencing such world changing events as 2 World wars, the Great Depression, Polio, Small Pox, and living under the constant threat that the Russkies might send an ICBM our way.

They lived on a diet of meat and meat derivatives, with everything being fried in bacon fat. They rode rail cars to the west, in the dead of winter, travelling over 1000 miles, just to try and survive. Dam the thirties would have been so much easier with Paxil or Effexor!

Prior to a heart attack at the age of 89, the only prescription medication my grandfather ever took was penicillin for a bout of Pneumonia. At 34 years of age, I apparently have Hypertension, and my doctor would like me to take Lipitor, because my HDL/LDL ratio is elevated.

When did a primary care physician’s first line of defence become a pharmaceutical intervention. 50 years ago the phrase “What doesn’t kill you, makes you stronger,” was fact, not cliché.

A downward spiral, perpetuated by HMO’s and Insurance companies alike, and in turn socialized medical systems like Canada have followed suit. The drug company guru’s have convinced the health care providers of the billions upon billions they will save with the latest and greatest panacea that they have. Less costly therapy and hands on treatment, more (cheaper) wonder drug cures
and in turn more Billions in profit for the Pharma Giants.

The following is my synopsis of a drug’s life span.

1. Find a disease/illness or disorder, that already has a proven, safe, effective therapeutic treatment (or just make one up)
2. Take former treatment and lambaste in the media and medical circles, as ineffective, and potentially lethal.
3. Take the molecule from the former treatment, and throw a couple of free radicals at it. Hence, giving you a new molecule and therefore many more years of patent exclusivity. (Or you can just change the name and market it for some other bullshit condition. See PMDD and Serafem.)
4. Perform animal trials, and conclude that your findings are favourable.(Make sure to cover up the fact that even more critters died on the new drug than the old one)
5. Start human trials of the new drug, while adopting a Clintonesque “Don’t ask, don’t tell” adverse reaction screening protocol, while only administering the drug to your trial subject for a fraction of the time that you would therapeutically use it in a real world scenario. Oh, and try to only test it on men. It seems that they don’t have nearly as many adverse reactions, or pregnancies.
6. Have studies published in every reputable medical journal, by doctors attesting to the efficacy of the new treatment and extolling how revolutionary this treatment could be.  Ensure all potential conflicts of interest are obfuscated, and that doctors have no freaking clue what the data, that has been authored in their name, actually says. (Really Dr. Biederman, I’m sure you just forgot about the extra $1,596,500 you were paid directly by drug companies, for your unbiased research.”) Personally, I’d sell my soul for a hell of alot more money, and I don’t even have a medical career at stake.

7. Compile a database of all the potentially lethal, life threatening and just plain nasty side effects of the new drug. My thinking is these get sequestered away in Drug Company storage facilities, because the FDA might actually notice so much data getting destroyed.
8. Submit “unbiased” trial data from 2 positive trials(could’ve had 50 negative ones) to FDA/Health Canada along with your Multi-million dollar License fee(payola) for approval.
9. Release new/old drug to consuming public, amidst barrage of multi-media frenzy on how you have a disorder and “Maybe you should talk to your doctor about it”.
10. Send out army of drones on a propaganda campaign. More affectionately known as Drug Detail Reps, they will meet with your doctor over lunch, golf, on a beach in Hawaii, to let him know that this new drug cures male pattern baldness, conjunctivitis, ringworm and the clap, all with no dangerous side effects. All in an elaborate and highly effective diversion technique to prevent them from doing their own independent research on the drug.(Also, give the doctor’s thousands of dollars of free product, so that way client is stuck with these often “exclusive” and very often addictive drugs.)
11. Doctor’s prescribe millions of prescriptions worth of the new drug over a period of several years.(Not because their patients necessarily need them, but because writing a script gets you the hell out of his office quicker.)
12. Almost like folklore, we start hearing stories of people dying, and babies being born disfigured, and the possible culprit could be this new drug. We usually hear this from a News source(TV or print), but almost never from the Governmental regulating bodies. Why? 99% of adverse drug reactions never get reported to the Government Watch Dogs.
13. After 5 or so years, and reaching the end of patent exclusivity, a first lawsuit will be filed on behalf of a victim of this drug. Really, as drug company, you have two choices. Either spend millions defending the claim, until the other party is financially devastated, or seeing that the evidence that your drug is evil toxic shit, pay a few million, coupled with a non-disclosure agreement that shut’s your great grandkids up. This will happen dozens, maybe even hundreds of times. (Hell, we’ve already made $20 billion. That’s the cost of doing business. Right?)
14. On the cusp of a patent expiring, congress will convene an inquiry in to allegations that the drug manufacturer hid information on dangerous side effects of drug . A whistleblower will step forward, with incontrovertible evidence, that the drug company knowingly marketed a dangerous drug and reaped billions of dollars in profit, knowing full well people were being harmed and killed. Company claims no wrong doing.
15. Government levies record multi-billion dollar punitive fines against drug company. However, unbeknownst to the general public, fine is levied against a subsidiary that is owned by an offshore numbered company, that has since gone in to bankruptcy. Why? Because any company that has been found culpable of criminal activity, can no longer bill Medicare. You see, this drug company also manufactures dozens of other medications, that have millions of Medicare covered people ingesting them. The government, in it’s infinite wisdom, feels it would be detrimental to the general public to stop dealing with and in turn paying billions of dollars to, a criminal organization.
16. Government asks company to add warning to prescribing information on drug. Drug company begrudgingly complies. What’s the big deal? Do those gruesome pictures on cigarette packages prevent ANYBODY from smoking?
17. Repeat steps 12 through 14.
18. Government asks company to suspend sale of drug to certain affected populations, i.e. adolescents, the aged, pregnant women and people with compromised immune system. Company uncharacteristically complies. Hell, their profit margins were slashed by 80% after their patent ran out and the generics moved in.
19. See steps 1 and 2. Wash, rinse and repeat.

New Despair

June 2, 2010
My dearest Matthew,

I have finally come to an experience I never thought I’d meet. For the first time in my life I feel some anger at God. This anger frightens me. God is my protector and Savior and yet here I am. I have been told many times that these feelings are normal, but somehow it feels wrong. I understand that God Himself made this emotion and that He can handle all that I can give Him. But still, I don’t like living with these feelings festering beneath the surface.

Oh, son. What could possibly send me over the edge into the unknown? Why has it taken so long? You’ve been gone for 1 year, 3 months and 13 days. Wouldn’t this have made more sense when I first lost you? It just seems that since your death, so many things have piled up on me. I don’t get to watch you, my precious little boy, grow up. God took you home from me. I know it’s not to punish me. I know He hurts for me too. But the feelings are surfacing that this is unfair. Then he took Simon half way through my pregnancy. That I just can’t understand. Emilie has had to defend daddy to a little girl while swimming that said daddy suffocated you. That is such a horrible thing to do to us. Who would start a nasty rumor like that? They have torn another piece of my heart out. Like that wasn’t enough, He has taken my fertility away. And the proverbial straw that broke the camels back? That was yesterday. As much as I was trying not to get excited or even hopeful, it was there. The only time I have been “late” was when I’ve become pregnant. For 7 glorious day, I let hope creep in. And just like that, it’s gone. Since losing you, I feel as though I am the butt of some cruel joke. Why? I just don’t understand. As much as I think about it, I just don’t understand what I’ve done to deserve such pain. It just seems to never end. As though I get through one hurdle of my grief and take a tiny step forward, another disappointment is sent my way. I just want it to end. I don’t know how much more I have the strength to take before I finally lose my mind.

Of course you also understand that I am also busy filling my time enjoying the wonderful gifts of your brothers and sisters. They keep me going and they keep me happy. Being a mommy is my life’s calling and I love every moment of it. I never forget about my children with me. I give them my all. They are my life. But it’s in those quiet moments when they are in bed and the house is quiet that I get fearful. Those quiet times when I sit alone with you and Simon and think of you. Talk with you. And completely and utterly miss you. That those temptations creep up on me. I get tempted to let despair overtake me. To let anger envelope me. To cry and scream at God with hatred. I don’t really hate God, but the temptation is there when I am at my lowest. That is when I must force myself to let go a little bit more to God. To give you back to God. To say goodbye again. It is such a strange battle. You are no longer here with me and yet I have to let you go everyday. It is something that must be done everyday. I end every day with my prayers. I spend a long time begging God to help me heal. To take good care of you and your brother. To protect our family and not let us lose our faith. I give you boys to God. And I ask that He help comfort me and help me through another day.

Our co-leader at Compassionate Friends described an experience she had. She described how at councelling, her “professional” said it was important for her to describe her son as dead. That she needed to tell herself that every day. She had a real struggle with it. So she looked up all the things that dead means. She came to the conclusion that dead did not describe her son, but her. Life described her son. She has moved forward in that it is not right for us to speak in the past tense with our children. To say that we “loved” them. Because as parents to a child who has died, we know that we will always love them. They are a part of our lives everyday. They are alive in our hearts. They are never truly gone. I much prefer that way of thinking. I just wish there were more people who could understand that. If they did, then ther would be no more time frame in which we must be done our grieving. Get it done. Get over it. Move on. In reality, we will be grieving our whole lives. The only true thing that can end our grieving completely is when we die ourselves and join our children forever. From the many other parents who have lost children many years ago, I have learned that life will get easier. The grieving will get easier. And lives move forward. But I realize the truth that their grieving will always be there. Society understands that an alcoholic is always an alcoholic. They become recovering alcholics. We never go back to who we were before our child died. We will always be grieving. We evolve and become recovering parents. New people. And hopefully, we will be stronger for it.

So on this note, Matthew. I give you to God again today. And pray you know I love you. I look forward to the day when I get to see you once again and envelope you in my arms. You are always in my thoughts. You have helped me to enjoy the others so much more everyday. Please help give us the courage we need to get through our lives, one day at a time.

Loving you always,
Mommy

Don’t Tell Me

Please don’t tell me you know how I feel,
Unless you have lost your child too,
Please don’t tell me my broken heart will heal,
Because that is just not true,
Please don’t tell me my (son) is in a better place,
Though it is true, I want (him) here with me,
Don’t tell me someday I’ll hear (his) voice, see (his) face,
Beyond today I cannot see,
Don’t tell me it is time to move on,
Because I cannot,
Don’t tell me to face the fact (he) is gone,
Because denial is something I can’t stop,
Don’t tell me to be thankful for the time I had,
Because I wanted more,
Don’t tell me when I am my old self you will be glad,
I’ll never be as I was before,
What you can tell me is you will be here for me,
That you will listen when I talk of my child,
You can share with me my precious memories,
You can even cry with me for a while,
And please don’t hesitate to say (his) name,
Because it is something I long to hear everyday,
Friend please realize that I can never be the same,
But if you stand by me, you may like the new person I become someday.
Judi Walker(In Memory of Shane)
Copyright 1998

My Second Mother’s Day Without You.

Here we are again. Mother’s Day. The day we celebrate Motherhood. Although I am blessed with 6 living children and enjoy being their mother immensely, I am also reminded of the ones I can’t physically share my day with. Looking back at last year, my first Mother’s Day without you Matthew, I can remember just how dark that day was. The hole in my heart so big it was hard to see anything else. I spent the day with your siblings but focused mostly on my loss of you. This year I thought would be better. Easier maybe. But these past couple of weeks, I have been filled with anxiety. So much so that I haven’t been able to eat or sleep properly. I am exhausted. I have lost lots of weight. It seems worse physically for me this year than last year. Like the initial shock of your loss has worn off. It has completely sunk in that you are gone from this life forever. It is not a dream or a joke. It is real. Of course, this year I am not only missing you but your brother Simon as well. I look at my family everyday and I’m reminded of my missing children. I am overwhelmed with the thoughts of where you would be today. How your personality would be. You would be on the move and probably in trouble often with your brothers. I keep thinking of your red hair and how long it would be. I think of my Mother’s Day picture of me with my children. Last year we posed with a picture of you. But do we do that again? Would it be silly to take a photo every year with your picture among us? And being the day it is, I looked at your album again. When I was finished, I was so confused. I went through your whole album and I didn’t cry. For the first time I didn’t cry. Looking at your pictures, alive and with God, and I smiled. I smiled at every photo. You brought me joy my sweet little boy. Joy that I need so much right now. Mother’s Day is a reminder of what I am not able to do right now. I failed you as a mother by not protecting you. I failed Simon as a mother by not being able to carry him to term. I failed myself and your daddy as a mother as I am unable to conceive. And I’ve failed your living brothers by exposing them to the antidepressants that killed you. I pray every day to give my sorrows to God. Every day to ask God to help me accept His will as my will. But I am failing. I cannot accept that God my merciful and loving Father, could end my family on two deaths. And I understand that if I don’t let go to Him, all my sorrows and anxieties, that those stresses may keep me from any future children. So I am asking you and Simon to help me, your mommy. Touch my heart and help me let go of my feelings of fear and failure. To completely trust in God. Help me to see the wonderful family I have and to feel your love. To move forward instead of being stuck. Help me to be the best mother that God has intended me to be. And I ask one more thing of you two special boys. While you are in Heaven with our wonderful Father this Mother’s day, that you ask for a Mother’s day gift for me. Ask God if you may help Him pick your next little sibling for us. And ask that before God lets that soul leave heaven and enter my womb, that you may kiss this child first. So that the first time I kiss that new baby, I will be kissing you back.
All my love little man. You are one [of 8] reason I love being a mommy. Even if from such a great distance. As for my other reasons, I will enjoy every minute with them as long as they are with me. Motherhood is a true gift.

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18