Posts filed under ‘Interior Health Authority’
Another year is here. You would be four years old. I can’t believe it’s been this long and yet it still only feels like yesterday. It has been building up for days now and my anxiety and sadness is at it’s peak. My journey in grief is still only in it’s early stages. But I know your day will be nice since we will be focusing on your day as a holiday from school to be filled with thoughts of you and celebration. We will be missing daddy though as he is off in Washington, DC, fighting for your cause. It will be the first that we are not together today and I hope it will be the only time. I was reluctant to let him go, but mostly due to selfish reasons. I did not want to have to wake up and face today with the other kids alone on my hardest day of the year. I know it will be hard on daddy too, since he is so far away and alone. We don’t have each other to lean on to make it through the day. Luckily daddy’s day will be filled with you and our battle to save lives. He is lucky. He gets to be on the frontline for you. I get jealous sometimes since I have to be in the background supporting him and taking care of our family. I wish I could be up there with him talking about wonderful you and helping to prevent more deaths. But I am slowly accepting the fact that my place is taking care of your siblings and encouraging daddy to fight the good fight. Without me backing him up, could he do this?
After four years, are we any further ahead? Some days I think not. Daniel wound up in the hospital again and the pediatrician offerred him medication to help stop his vomiting so he could rehydrate. She had no plans on giving him an IV. She decided on a drug. And even though we brought up drug risks, she went and got it anyway. She could have gone quickly to the computer and googled the drug to see that it is contraindicated in children under 3 and to not give it if the patient has electrolyte imbalance such as in dehydration. Or the other warnings Health Canada has put on it. Instead she came back and gave it to him. A few people have told us we had the right to refuse the drug. And yes we did. But how do you refuse a drug that she took out of it’s package as she came to our bed and then just shoved it in his mouth? Coming home and researching the drug, we would have definitely told her no. The study on it had shown that it is no better than placebo in children and in fact caused the vomiting children in the study to get diarreah. So I have to ask myself, how do these things get on the market? And then give it to my child under 2 with a heart defect? And the answer we get from the hospital? Those warnings have to be put there but don’t really need to be followed. All our work and this happens again? At least at the end, we were told that the hospital now monitors all newborn for their first 48 hours if they were exposed to antidepressants. That sounds like progress, only we didn’t see any proof. We’ve been jerked around so much, I am reluctant to believe them. And I question them if they even ask the women coming in if they are on them. I only pray that what they said is true and they are in fact doing this. Babies can be saved and maybe they’ll begin to notice how these exposed babies are reacting. That is a right step in the right direction. But I am still waiting for our case to be taken care of. I no longer want your death swept under the rug and pretend you never happened.
So again, I face your day with sadness. I will get through it. I will enjoy it. We have so much planned today that it should be quite happy. The kids have been so excited for today. They picked your cake and balloons and plan to spend the afternoon decorating the kitchen and your wish lanterns. It will be so nice to send those off this year and I’m optimistic since it’s much warmer compared to last year. Will you be watching? WIll you be waiting for your balloons and lanterns? I wish I could begin to imagine what you would look like now and sound like. I dream of that often. As you watch us celebrate from heaven, please say a little prayer for daddy so he doesn’t feel so alone and for your siblings so they always remember you. Happy BIrthday little man. Mommy loves you so much.
Another year without you. That makes it 4 now. It is still difficult. Knowing that you won’t be here in the frenzied morning ripping open your presents like the other kids. But you are far from forgotten. You two are stil included in our Christmas. You two have your stockings, but in a special place. We have ours and the childrens on our mantel, but you boys have yours held by an angel. As much as I wish they were hung with the others, I just can’t bring myself to have two empty stockings looking sad intermingled with the other full stockings. Your angel is dutifully keeping you two prominent and we look at her often as she stands guard with those socks. She even moves around the room, and occassionally dances around the room as Daniel likes to carry her around. I like to pretend he is playing with the two of you. I guess whatever I can make up to make myself feel better is never too bad a thing. So to my two angels, Matthew and Simon; Merry Christmas! We love you so much.
We went and got ourselves family portraits. We usually just set the camera on timer and do it ourselves. But we saw some work from a young lady who takes photos for a hobby. She charges very well and the work I saw is very good. We had a great day posing by the river although it was quite cold. Being November, it was minus 5 degrees Celsius. So our photos were taken quite quickly. Amery asked Matthew for some sunshine and he delivered. I wish he would have also asked to be a freak warm day, but it was a lovely day anyway. This young lady was very patient with our brood and especially our very busy and rambunctious boy. My favorite thing about her was her willingness to include our angel boys. After I discussed our loss of Matthew and Simon, she said it was important to include them as well since they are our family too. She made time to take photos of Amery and I with our teardrop ornament with two feathers in it, one for each boy and do something special. Getting the pictures done, I was moved by her kindness. She is young, but very empathic. I received the discs with the pictures and when I saw the photos, I was moved to tears. Here we have a photo to add to our wall of our angel boys.
It only takes a moment to make grieving parents feel some joy. And she took a few moments. We let the kids go to the van with daddy to warm up and she sat in the cold with me and listen to me talk about our boys. She said she was happy to find a way to incorporate them in our photos and was sorry we couldn’t have them in the photo with us. She said she would do something with the pictures and try to make them special. She also said that our boys are always going to be a part of our family and to not worry about talking about them in front of her. It was an amazing gift from a young lady I just met. Whenever I see her, I always smile. She goes out of her way to greet me and my children. Whatever her parents did while she was growing up, they did a good job. I’m sure they are very proud of her. I hope she continues with her passion and to touch other people. Who knows, maybe she’ll take the information I gave her on looking into the Now I Lay Me Down To Sleep program and help other grieving families. Her kindness proves she would be really great at it. If only there were more adults as mature as this young lady.
Will it ever end? The damage these drugs leave in their wake seems to pop up everywhere. I see it on the news and with new people I meet that tell me how it has affected them. I see it with myself and my boys. For me it’s still, 3 years after I got off of them, sleeping. The jerks or muscle crawling. The dreams. For my boys, it’s sleep walking and night terrors.
And Jacob. My poor Jacob. It has affected him the worst of my living boys. He has learning disablilities and dyslexia. His atonomic nervous system has been affected. The specialists at BC Children’s Hospital agree it’s his autonomic system, but unfortuately they can’t pinpoint exactly as they are not sure how to look since it involves the brain. They could probably tell us through an exam of his brain at autopsy. I for one, don’t want that option at all. His fight or flight is at extremes and we are never quite certain just how he will react. We have to be paying attention at all times so he doesn’t hurt himself or others. It’s quite a job to calm him down as he doesn’t have the capacity to calm himself. He just lives un utter fear or fight for his life, sometimes even over little things. It’s so hard as his mother to watch him like this because he wants to control it and he can’t. I can see the fear and begging in his eyes to help him make it stop. And then afterwards, if he can remember, he feels downright awful. Not the life I anticipated for my little guy.
And his digestive system. That is also something that seretonin affects. And my poor boys digestive system is an issue all its own. He cannot feel his bowels. That means he doesn’t know if he has to use the bathroom. And when he sits to try, doesn’t know how to use the muscles it takes to push since he can’t feel the contractions. Oh, he pees just fine and even stays dry at night for some time. But he can’t tell if he needs to have a movement. The doctors at BCCH have given us a regiment of PEG and practice. Give him the PEG to keep his stool soft and go on the potty after mealtimes to get in the habit of using the toilet. They anticipated that with a strict regiment, his bowel would shrink and he would learn to feel again and successfully use the toilet in a year. Here we are a year and a half later of the strict regime and still no where closer. Actually, I think he’s worse, as he hasn’t pooped in a week. Something so simple that we take for granted and probably never think about it unless it’s a problem, has been a problem for his whole life. I can’t help but hurt for my boy over a natural, automatic system, that he doesn’t have. So unfair.
So off to the hospital in Kamloops he goes. They are going to put a tube in his nose, down to his intestines and pump him full of fluids and PEG to get the poop out. His colon should only be 3cm wide and he’s at 7cm at last XRay. The doctors hope, is that they clean him out at the hospital so that his bowels are empty, and shrunk back down to 3cm. Then we continue our regiment, that shrunk back to normal size, his body will eventually learn to ‘feel’ when something enters the bowel and he will go on his own. After 7 years of this, I am not particularily optimistic. I have asked for help for so long and only recieved it after Matthew’s death. I am glad that Matthew left behind some clues to help his big brother. But until we find some medical professionals who actually believe these drugs are bad and could really be the culprit in his issues, we are up said creek without a paddle.
A new mission begins, and begins for Jacob. Finding a way for his body to work properly to some extent and getting the message out that these drugs affect the unborn in different ways. They will have long term damage. Even if they don’t believe that their son or daughters behavoiral label in school could be linked to the exposure they had in the womb. Drug exposure seems to affect impulse control and judgement among other things and at different levels. Of course, if most people look at an older child with behavioral issues who were born addicted to cocaine or meth or crack, they will agree it makes sense that the drugs could cause these things. But not antidepressants. No way. They are safe. They may not even pass through to the baby at all. Even if I show them the chemical makeup and the fact they are very close to cocaine, no way. Cocaine is an illigal drug and is bound to cause damage. Isn’t that why it’s illigal? But antidepressants are a prescription with the doctor certain they are safe so that makes all the difference in the world. And to compound the issues, parents seem to have no problem putting more of that poison into their child’s body such as antidepressants, antipsychotics and/or behavoiral medication such as Ritalin. How does one help change the world so our children are safe? It seems an impossible task. One that I will gladly take on. Even if I only help save one child from any risk, it will be worth it.
Happy Birthday Matthew. I can’t believe that it is almost 3 years to the minute since we said goodbye. We barely even got to say Hello. 3 years and it feels like just yesterday. 3 years and it feels like an eternity sometimes as well. Every year, every day is a stark reminder of what we will never get with you. This is your 3rd Birthday. What will your 13th or your 30th be like?
This is not natural son. Mommy and I are not supposed to be celebrating your birthday without you. 3 is that age where kids really start to understand the magic of a Birthday Party. I hope you can see it. We’ve got balloons, decorations, even a Dairy Queen Ice Cream Cake picked out just for you. You would love it so much. It’s a really special day this year. Your baby brother Daniel will get to destroy a piece of your Birthday cake.
We’re working on change son. Just this past week we met some of the great people that have helped us to get your story told. Each one of them is a hero of mine in their own right. Yes, because they are fighting to help us make sure this doesn’t happen to other families, but more so because they remember you by name and you are important to them as well. It is that remembrance that keeps you alive.
3 years and still nothing major has changed though son. Sure they’re talking about implementing change, but until that happens, other babies and their mommies are in danger just like you.
Not a day goes by that I don’t ache to hold you once more. That day will come again. But we still have lots of work to do here, okay. I will never stop loving you. I will never stop missing you.
All my love,
If only the title of this blog were a true indication of how I am feeling about the latest developments in Matthew’s case and with psychotropic medication prescribing in general.
Certainly we are making progress; if you can call a cautionary position statement being issued by the Canadian Pediatric Society, after having Health Canada warnings around for over half a decade progress. The position statement can be found here: http://www.cps.ca/english/statements/FN/fn11-02.htm
Experts in the fields of neo-natology and drug exposure during pregnancy have been advocating for over a decade that babies exposed to SSRI’s and SNRI’s must be monitored for adverse events at birth. Even the drug company shill Gideon Koren at the Motherisk Program in Toronto has gone on record as far back as 2008 saying that we should at least be monitoring babies exposed to antidepressant drugs. So, the position statement being issued by the Canadian Pediatric Society is best summed up in the words of our good friend and ally Barbara Mintzes from the Therapeutics Initiative at the University of British Columbia. She stated the following to me after reading it:
I just looked at the CPS position statement and agree that this is bad advice – essentially supports SSRI use in pregnancy. For paroxetine the only recommendation is lowering the dose or maybe switching antidepressants. All of the evidence on harm from SSRI use in pregnancy is treated with a heavy dose of doubt, concern about methods etc., but the benefits of antidepressants in pregnancy are taken at face value. I didn’t see any recommendation for first-line use of non-drug treatments in pregnancy, for example, and SSRIs are seen as necessary for ‘moderate to severe depression’ despite their poor record of effectiveness. There are no direct recommendations to avoid antidepressant use if possible, to look at other options.
I and most others not on a drug company payroll would tend to concur, Barbara. What the CPS position statement fails to mention is that each of the authors of said statement either have pharmaceutical company conflicts or are heavily influenced by those that do. You can look it up for yourself.
As it has been quite some time since I last blogged, we have had some very exciting developments happen as of late. Recently we have had a wonderful woman come in to our lives, Dr. Gerarda Cronin. She is the new Medical Director for Perinatal and Child Health for the Interior Health Authority of BC. Apparently, her job was created in the wake of Matthew’s death, and we are extremely grateful for her. In her capacity as the Regional Medical Director, Dr. Cronin also has a considerable amount of influence with not only Provincial Health standards, but also those at a national level as well.
This past week, Dr. Cronin forwarded to me the following edict from Perinatal Services BC. I take great pride knowing that it has been our hard work and diligence and the media pressure that has been continually applied by our good friends locally as well as at a national level by the CBC, that indeed is causing the necessary governmental bodies to act.
As the advisory states, we have been asked to be part of the Provincial working group that it alludes to. I guess these people understand that we won’t be silenced and that we in fact have some important things to say.
I have come to a stark realization this past week, that we in fact are treading on uncharted ground. If I am not mistaken, no jurisdiction in North America, perhaps even the world, has taken steps to formally address the dangers that psychotropic drugs pose to developing and newborn babies. If we are remembered for nothing else, and if Matthew is remembered for nothing else, his life was lost so that countless others may be saved. Although the pain can be unbearable at times, we know our angel is cheering us on. We will not be silenced, we will not give up.