Posts filed under ‘Patent Ductus Arteriosis’

Happy 3rd Birthday Son

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,

 

Daddy

February 21, 2012 at 7:37 am 1 comment

Changes, they are a comin’!

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.

November 28, 2011 at 12:21 am Leave a comment

Under Pressure

The following is an email that I received the day before our story ran in the paper.

Good afternoon Mr. Schultz:

Thank you for taking the time to return my call this afternoon.

As I mentioned, your letter to the Honourable Christy Clark makes reference to your correspondence to Ms. Lapointe dated on or around May 20, 2011.  I was away from the office at this time and I would greatly appreciate it if you could e-mail me a copy of this correspondence.  I do apologize for any inconvenience this may cause you but I am very appreciative of your help.  I understand you are away at the moment and I look forward to receiving your e-mail at your earliest opportunity.

Kind regards,

Claire

 

Claire R. Leek | Executive Administrative Assistant to the Chief Coroner

Metrotower II, Suite 800 – 4720 Kingsway, Burnaby BC  V5H 4N2
Phone: (604) 660-8219 | Blackberry: (604) 992-9323 | FAX: (604) 660-7766

 http://www.pssg.gov.bc.ca/coroners

 

 What does this mean exactly? Did someone actually receive my letter or not? It’s interesting how the Coroner’s Secretary says,”I was away from the office at this time”. Sounds to me like a nice way to say we lost your letter and nobody is going to ever accept responsibility for it.

Then our story hit the paper and the TV and what do you know? I recieved the next email from the Coroner’s office.

Good afternoon Mr. Schultz:

 Please accept my apologies for the delay in replying to your e-mail dated August 2, 2011.  I have spoken with my colleague, Ms. Kellie Kilpatrick, Director of the Child Death Review Unit and sought the information you requested.  Kellie has asked me to share the following with you.

 The child death review methodology includes the following:

  • The case reviewer examines the Coroner’s file;
  • She determines if there is additional information that may inform the review – this may require seizing records and files held by other agencies;
  • In most cases, a letter is sent to parents advising of the review, explaining what it means, how their child’s information will be used, and inviting them to participate in sharing their perspective, experiences, concerns, and helping us understand who their child was in life;
  • All child deaths are then presented and reviewed by the CDRU multi-disciplinary team;
  • Protective factors, risk factors and other observations are considered and a determination is made re: preventability;
  • Recommendations are researched, considered and made to improve the health and well-being of children.

Matthew’s case was assigned to Paediatric Medical Case Reviewer Tansey Ramanzin and her initial review was completed on June 3.  Matthew’s case has been identified as one where a letter will be sent to you.  You will likely receive the letter next week.

Should you choose to meet with Tansey it is possible to meet in person (on the lower mainland), talk on the phone or correspond in writing – this will be dependent upon your wishes. Many of our courageous parents share what they have learned and their views on prevention with the hope that other families do not have to experience the unthinkable  – the loss of their child.  

Matthew’s death is scheduled for review by the multi-disciplinary team on September 20, 2011. The deliberations of the multi-disciplinary team are protected under the legislation but any action items or recommendations arising would be shared with you.

Kellie has also asked that I extend the deepest condolences of her Unit to you and Matthew’s family.

I hope you find this information useful Mr. Schultz. 

Yours truly,

Claire

 

Claire R. Leek | Executive Administrative Assistant to the Chief Coroner

Metrotower II, Suite 800 – 4720 Kingsway, Burnaby BC  V5H 4N2
Phone: (604) 660-8219 | Blackberry: (604) 992-9323 | FAX: (604) 660-7766

 http://www.pssg.gov.bc.ca/coroners

Amazing how people are moved to action when the media is breathing down their neck. Two dead babies whose parents are screaming for justice; Who gives a shit?  Media discussing how inept your Ministry is; We’ll move you to the front of the line Mr. and Mrs. Schultz.

The Child Death Review Unit is just not good enough though. I have little faith that they are anymore than a simple extension of the rest of the bumbling Coroner’s Service. We’re not even allowed to sit in on the deliberations. Why? Are you afraid that I may call you all fucking idiots?

So, Since the Chief Coroner’s Office lost my original request for a Jury Inquest, I obligingly sent a revamped, updated version of it to Chief Coroner Lapointe’s attention. Here it is in its entirety.

1959 Sage Place

Merritt, BC  V1K 1G2

 

 August 5th, 2011                                        

 

 

Lisa Lapointe, Chief Coroner

Metrotower II Suite 800 – 4720 Kingsway

Burnaby, B.C. V5H 4N2

Dear Lisa;                                

On February 21, 2009, our son Matthew was born and died at Royal Inland Hospital in Kamloops, BC. At the time, we were left in utter shock as to what had transpired, and today we are still as shocked by how ineffectual and apathetic the BC Coroner’s Service has been with handling our case.

Beginning on the morning of Matthew’s death we have encountered ignorance, unprofessionalism, complacency and at times, utter incompetence in dealing with various members of the Coroner’s Service. Although I understand a good, thorough investigation can take time, I find it absolutely inexcusable that the investigation of Matthew’s death took 2 years to the day for Dr. Robert Saunders to issue his “Final Report”. Yes, we were issued the final report on his 2nd birthday/anniversary of his death. The irony was not lost on us.

The findings of this “exhaustive” investigation were lackluster at best. Although much information was shared with the various investigators involved with our case, each and every concern that was brought up was categorically discounted. Coroner Saunders relied heavily, almost exclusively on the medical opinion of Dr. Tim Oberlander, Professor of Developmental Pediatrics at UBC. Dr. Oberlander’s report is full of factual inaccuracies and even outright fallacy. One of the very bold statements that he made when reporting to Coroner Saunders was, “To date there have been no reported cases of SIDS following prenatal SRI exposure.” This statement in and of itself indicates to me that there was never any investigation done. Dr. Oberlander is a Clinical Researcher by profession, and yet I, as a layperson without any university education whatsoever, was able to find at least 3 cases on the Health Canada MedEffect Database, and no less than 8 cases on the US FDA equivalent, in about 20 minutes using my home computer.

Tim Oberlander seemed to be very understanding at the outset of our journey, even stating that he would be making recommendations about newborn monitoring after exposure to these drugs. By the end of the investigation he was singing a very different tune. I would be remiss if I didn’t mention that the very agencies that Dr. Oberlander works at, the Child and Family Research Institute at BC Children’s Hospital as well as UBC, receive heavy funding from Pfizer, the manufacturers of the drug Effexor which he was investigating. In fact, in December 2009, Pfizer made an extremely generous funding announcement of $9 Million to these agencies. I would never be able to prove it, but that certainly would be enough money to compel him to silence. Regardless, it represents a huge conflict of interest.

It was this discounting of evidence, incompetence of investigation and failure to make any recommendations that spurned me to request a formal inquest into Matthew’s death. This was done in the form of a letter sent to your office on or about May 20, 2011.

There were numerous aggravating factors that contributed to Matthew’s death. Any one of these factors by themselves should warrant a recommendation from a body whose mandate is to make “recommendations to improve public safety and prevent death in similar circumstances.” (emphasis added)

Officially, Coroner Saunders would like Matthew’s death to forever be enshrined in history as “consistent with a finding of SIDS” and “Natural”. However, there are a multitude of issues that render those findings obsolete. Some of those being:

–         Matthew’s exposure to the antidepressant Effexor which has a well known risk of adverse reactions in the neonatal period.

–         The narcotic Fentanyl was administered to my wife within 45 minutes of  delivery.

–         Failure to have a clear, well established protocol for administration of Fentanyl in Labour and Delivery unlike other jurisdictions in Canada, such as that from Nova Scotia found here: http://rcp.nshealth.ca/sites/default/files/clinical-practice-guidelines/fentanyl.pdf

This protocol states in unequivocal terms the following:

Neonates who DO NOT require naloxone at birth, but whose mothers receive

Fentanyl within four hours of delivery, must be observed for at least TWO hours post delivery in labour and delivery. (emphasis is from original protocol)

–         Failure to have a clear, well established protocol for monitoring of newborns exposed to psychotropic medications, like those set out in the Journal of Obstetrics and Gynecology Canada in April 2009 and other publications.

–          Both Effexor and Fentanyl use the same CYP450 enzyme pathways to metabolize and would definitely interact with each other, as well as previous codeine exposure. Although genetic testing for polymorphisms of these enzymes in both Matthew and my wife Christiane were recommended very early on, they were never completed and I demand that they do be completed.

–         Toxicology results were requested by myself, especially for Fenatnyl and those have never been forwarded to me, although I received the assertion they would be. If I am not mistaken a urine sample should have also been collected from Matthew and frozen. I would also like to have a complete toxicology done on this sample including for Fentanyl.

–         Histological findings on Matthew’s autopsy were consistent with a diagnosis of Pulmonary Hypertension. Gail Holotuk argued with me that that was not the case. In the pathology report, Matthew’s lungs had “marked capillary congestion”. This is consistent with a diagnosis of Pulmonary Hypertension and I have the literature to prove it.

–         Misdiagnosis and discounting of obvious respiratory distress.

–         Matthew’s brain cell growth anomaly that is a confirmation of previous findings in rat models exposed to these drugs.

–         Understaffing on the maternity ward.

–         Repeated failure of hospital staff to listen to patient concerns.

–         Similar neonatal issues with 3 of our previous children exposed to the medication Effexor. Our 7 year old have been born 5 pounds at full term and suffering from Persistent Pulmonary Hypertension himself. To this day he still has autonomic regulatory issues.

–         Health Canada warnings issued in 2004 and 2006 regarding the potential for adverse reactions in newborns from all SSRI/SNRI medications that never made it to doctor’s hands. Effexor was not even listed as a risk factor in Matthew’s birth record, although it had been for some of our previous children.

As I stated already, any single one of these issues could have and should have resulted in the Coroner issuing a recommendation to prevent a tragedy like this from happening to another family. The pathologist who performed Matthew’s autopsy at BC Children’s Hospital, Dr. Angelica Oviedo, rendered the opinion that Effexor was likely the cause of Matthew’s death. In fact she felt so strongly about this that she made a report to Health Canada’s Canada Vigilance Adverse Reaction Online Database. In comments made to me in July 2010, shortly before the addendum was issued to Matthew’s autopsy, she told me, “His lungs didn’t make the switch.” Meaning that he was still suffering from what she referred to as “Persistent Fetal Circulation” or as is commonly referred Persistent Pulmonary Hypertension.

Yet, Coroner Saunders has chosen to do nothing. And the result of this has been another baby dying under very similar circumstances, the mother having dealt with the same hospital, same doctors, and same medication even. Alas, these are not isolated incidents; but for now I do not need to speak of the other cases I know of.

Greyson Rawkins, whose mother Nicole Rawkins also took this drug in a much higher dose throughout nursing and pregnancy, was born in January 2011 at Royal Inland Hospital in Kamloops, BC as well. Your office is also investigating his death. At present his brain is also being examined for anomalies, and I am quite optimistic that a similar anomaly will be found with his brain. Something I have found very interesting, is the fact that in Greyson’s case his cause of death was deemed UNDETERMINED although there is compelling published evidence that even exposure to Effexor via breastmilk is highly toxic to a baby and can cause serious respiratory distress. Yet in Matthew’s case, his death was deemed NATURAL. Is it really the position of the BC Coroner’s Service that it is perfectly natural for a 2 hour old baby to die in a hospital setting? Especially after the family fought with hospital staff over his color and breathing difficulty, only to be downplayed and at one point kicked back in our room because we were “disturbing other patients”. Especially after being exposed to not one, but two medications that have the very common side effect of causing respiratory distress in newborns.

Successive coroners failed to listen to us. Matthew was in distress immediately at birth, and he was until he died. We fought with Dr. Poelzer and the nursing staff over this. Yet this fact was continually ignored by Coroners Holotuk and Saunders even in to the final Coroner’s Report.  We have pictures that show his cyanosis and how briefly after he received 100% oxygen his color pinked up a little, yet we were continually told that he had facial bruising and that his symptoms were normal. I guess death is normal as well. No one from the Coroner’s Service has ever looked at these pictures.

In April 2009 when speaking with Gail Holotuk via telephone, I had a heated exchange with her over the fact that we argued with hospital staff over Matthew’s breathing. This telephone conversation culminated in her saying to me, and I quote, “Why didn’t you say something about his breathing?” I was floored. Not only had I told her on numerous occasions that we were complaining about Matthew’s breathing, the tone of her voice was shifting blame to me. I called her a stupid bitch and hung up the phone. Dr. Oviedo the pathologist gave heed to these concerns somewhat and issued the autopsy addendum in July 2010. But it still seems that respiratory distress was not an objective finding of any coroner investigating Matthew’s death.

Effexor or venlafaxine as it is generically called is a drug known as an SNRI (serotonin and norepinepherine reuptake inhibitor) which falls into the class of drug known popularly as antidepressants. Chemically, these drugs are not dissimilar from amphetamines or cocaine. Although the prescribing of antidepressant medications during pregnancy is not an indicated use, pregnant women are increasingly marketed to, and estimates put the number of women taking these drugs during pregnancy around 15-20%.

There is compelling evidence available that these drugs should not be prescribed to pregnant women. The strongest example of this was compiled in a study published January 2010, entitled “Are antidepressants safe in pregnancy? A focus on SSRIs”.  This study was compiled by the Therapeutics Initiative at the University of British Columbia and states clearly when specifically discussing the prescribing of antidepressants in pregnancy, the harms exceed the benefits in this setting”.  Again, it would seem the BC Coroner’s Service chooses to ignore information like this.

 

There are several things that I am seeking from you in your capacity of Chief Coroner. Firstly, based on the shortcomings, errors and even apparent conflict of interest on the part of the main expert consulted, I am seeking to have this case reopened and that a formal inquest be held. There is overwhelming evidence that Matthew’s death should be listed as ACCIDENTAL, and I am seeking that this be changed from the present finding of NATURAL.

Secondly, the genetic testing previously mentioned that has never been carried out. I request a full screen of all CYP450 enzymes on Matthew’s blood as well as my wife Christiane. This must be done, and I am well within my rights demanding it, as it was something we were told was going to be done. This is vital to the health of any of our children as well as pinpointing the causes of Matthew’s death.

At this time, as I have a need to consult with experts outside the sphere of influence of the BC Coroner’s Service, I would also request copies of any and all files related to the investigation of Matthew’s death. This would include test results, interviews, investigative notes, pictures (as graphic as they might be) etc. as well as an inventory of any biological samples of Matthew’s that might still be in the possession of the BC Coroner’s Service or any other agency .

I look forward to your response.

Sincerely and respectfully.

 

 Amery Schultz

1959 Sage Place

Merritt, BC V1K 1G2

250-315-5632  email: amery_s@telus.net

So,  after sending this email, I again receive an email from the Chief Coroner’s Secretary.

Good afternoon Mr. Schultz:

Thank you for your e-mail and attached letter to Chief Coroner Lapointe.  Chief Coroner Lapointe will respond to you in full in due course.

Yours truly,

Claire

 

Claire R. Leek | Executive Administrative Assistant to the Chief Coroner

Metrotower II, Suite 800 – 4720 Kingsway, Burnaby BC  V5H 4N2
Phone: (604) 660-8219 | Blackberry: (604) 992-9323 | FAX: (604) 660-7766

http://www.pssg.gov.bc.ca/coroners

 

She’s going to “respond to me in full in due course.”

WHAT THE HELL DOES THAT MEAN?!?!?!

Tomorrow? Next week? Next month? When she’s met with the Coroner’s who botched Matthew’s case and can formulate a good enough bullshit excuse as to why they don’t need to reopen the investigation?

The evidence seems pretty strong to me that Effexor by itself or in combination with Fentanyl caused Matthew’s oh so evident Respiratory Distress, that nobody seems to have a recollection of other than us, his parents.

Matthew’s death was not natural. Plain and simple. Any one of the points that I list in my most recent letter to the Chief Coroner confirms that statement.

 

August 9, 2011 at 9:11 am Leave a comment

Open Letter to Christy Clark, Premier of British Columbia

The attached is a letter that I am sending to Christy Clark, as well as various politicians and dignitaries who may have an interest in our case. I am alsio forwarding copies of this letter to various media outlets in hopes that they may also pressure some of these people for answers.

July 23, 2011 at 12:14 am 1 comment

How far could your head be up your ass???

This past week I recieved what is supposed to be the final report from the Coroner on Matthew’s brief life and death. As I allude to in the title of this posting, the presiding coroners have their heads firmly implanted in their collective asses. I have taken the liberty of uploading the three pages of the report here. The irony of this report being issued on Matthew’s second birthday was not lost on us.

It doesn’t take long in reading this report to notice that it defies logic. I will also point out that the Doctor issuing this report is an emergency room physician and has no speciality in neonates or drug toxicology.

You will notice under Medical Cause of Death

(1) No Anatomical or Toxicological cause of death.

Yet, only a few lines down at item

(2) Other Significant Conditions Contributing to Death     

Exposure to venlafaxine in utero.

By What Means           Natural

 

As a layperson I read this to mean that having been exposed to venlafaxine in utero is a Natural way to die. Anybody left scratching their head at this point?

The next page goes on to describe the fairly tale that was to have been Matthew’s medical care over his brief life.

In paragraph 2 of this page Dr. Saunders reports on the medications Matthew was exposed while in utero. He goes on to describe what Tylenol 3 is and Effexor.

What he fails to mention at this point is that Health Canada and the FDA have both issued strong warnings regarding the fact that upwards of 30% of babies exposed to this drug will have moderate to severe withdrawal symptoms, respiratory distress, PPHN, prolonged QT syndrome, and like Matthew, sudden death.

Two more paragraphs after this, he notes that Christiane was administered 100 micrograms of Fentanyl for pain just 45 minute before delivery. This fact in and of itself raises red flags with most of the doctors I have spoken with over the last two years. Most jurisdictions throughout North America have established protocols that dictate newborns exposed to this potent opioid within several hours of birth MUST be monitored for the first number of hours after birth.

In Matthew’s initial assessment, the doctor and nurses were throwing the idea of administering NARCAN around, but never did. This could have been vital.

Dr. Saunders goes on to explain how Matthew was assessed. At 2:35 AM, he was reported to have “normal colour and a heart rate of 160 per minute with a respiratory rate of 70 per minute.”  The following picture was taken of Matthew during the aforementioned assessment.

A person does not have to have any specialized medical training to notice that his coloring was anything but NORMAL. Each and every doctor and nurse that I have shown this picture to in 2 years(about 40) has said that his coloring is not normal. This coupled with a respiratory rate of 70 should have been a red flag for any of the medical staff treating Matthew. It certainly was for us.

Christiane argued with the doctor and nurses that he looked like an eggplant. We were told that this was normal. Prior to Matthew we had 4 other babies of our own and had experience with other people’s newborns. Our experience told us this was not normal. Why didn’t we fight more?

The final paragraph under Investigative Findings speaks to Dr. Saunders overall investigative ability. It notes that at 3:20 AM the infant was checked by the midwife. If you will read back to the very first paragraph on this page it says he was found at 3:30 AM by his nurse to be limp and cyanotic. Anybody see a problem here?

There is actually a couple of problems with this anomally. First, at 3:20 AM Matthew was still very much alive. That was the time when I was in the hallway with him complaining to the nurse that he was breathing funny and “clucking”. Only to be told to get back in our room as I was going to disturb the other patients on the ward. It was not for another 10 minutes that someone came in to the room. By this time he had gone in to full cardiac arrest.

This time anomally is just one of many factual innaccuracies that Matthew’s birth record and three subseuent doctor’s reports are riddled with.

This brings us to page three of his report.

This page is supposed to have summed up any medical testing and expert opinions regarding Matthew’s cause of death. What this page fails to mention is that very early on the pathologist , Dr. Angelica Oviedo, stated in her report that her findings were consistent with a neonatal diagnosis of Persistent Pulmonary Hypertension.

It is mentioned that samples of Matthew’s brain tissue were sent to the USA. This was to Dr. Hannah Kinney at Harvard. What is not mentioned here is that there was a defect in Matthew’s brain stem and she postulates “….we speculate that the duplication of the dentate gyrus in our case is a reflection of excessive neurogenesis associated with prenatal ssri exposure…..and represents a direction of further research.”

One “expert” was consulted on this case. This was Dr. Tim Oberlander. The report cites him as a consultant in Complex Behavioral Conditions. That was not why he was consulted. It was in fact his supposed expertise in drug exposure during pregnancy that brought him in to the fray.

When Dr. Oberlander first came on board, he verbalized to me that when all was said and done, he would issue a recommendation establishing a protocol for neonates exposed to these drugs in utero. Over the one year that I conversed with Dr. Oberlander, his demeanor and stance on SSRI’s seemed to shift. Culminating in a 6 page report that is summed up here  

“Matthew’s death is consistent with sudden infant death syndrome(SIDS). At this point it remains unclear how prenatal exposure to a serotonin reuptake inhibitor (SRI) antidepressant(Effexor) might have contributed to his death, if at all.”

IF AT ALL????!!!! Are you f#$%ing kidding me? SIDS?

SIDS is a diagnosis of exclusion. It should only be applied to an infant whose death is sudden and unexpected and remains unexplained after the performance of an adequate postmortem investigation including:

  1. an autopsy; another autopsy
  2. investigation of the scene and circumstances of the death;
  3. exploration of the medical history of the infant and family.

It’s number 2 here that is the kicker. All the signs and symptoms were there.

The drug warnings and exposure that were ignored. The obvious respiratory distress that Matthew was in that went ignored for 40 minutes.

The best that you professionals can come up with is SIDS? Then by rights his cause of death should be listed as undetermined and not NATURAL. I will be pushing for this to be changed to, at a minimum ACCIDENTAL.

There were glaringly obvious mistakes made along the way with Matthew, yet the one person who has the ability to impliment change to ensure this doesn’t happen to another family signs off saying “No recommendations are made.”

I really wish he would have added, “I don’t give a shit about the death of your son.” Because that is how this report has left us feeling.

After I came down off the ceiling, I phoned the Coroner’s Office and spoke with dickhead’s boss. She encouraged me to put all my concerns in to writing and send them off to the Chief Coroner for the Province. Which I am doing. As well as sending this to every media outlet, politician, and medical authority that I can think of.

We are somewhat fortunate in that this issue doesn’t die here. In British Columbia we have a panel, much like a Coroner’s Inquest, called the Child Death Review Board that must now look over the facts of this case. I will be lobbying them heavily. The Coroner’s Service of BC’s tagline is “We are a fact finding agency, not a fault finding agency.”

I’d be left more at ease had Barney Fife headed up this investigation.

I’ll keep you posted.

March 7, 2011 at 9:49 am 3 comments

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.

December 12, 2010 at 5:27 am 2 comments

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.

September 3, 2010 at 1:05 am 5 comments

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  • Is not coping well at all. Loss sucks! 7 years ago
  • is scared to bond with this baby, just in case. 7 years ago
  • Happy 6 months today baby. I love you Matthew. 7 years ago
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