Three Person IVF – And Why Canadians Need To Start Hearing About This!

And I breath a heavy sigh, I have been so silent, so afraid to speak my mind, so worried that I would offend people who I deeply respect, but after much thought and a lot of kicking myself for not being strong enough to speak my mind I am going to take a stand, at least on this topic, and hopefully on many others that I do have strong convictions about.  I am going to stop lurking around and stop trying to be so diplomatic, none of that is doing me any good, I will comment and post from now on with my head and heart in tact, knowing I am writing with true conviction and not with trepidation.

finding-your-voice

So what is this first topic that I have chosen to potentially take a comment lashing on, it is about Three Person IVF.

I recently read Sarah R. Cohen’s Post on this topic:  “Three Person IVF in Canada – and why you aren’t hearing about it”. She writes:   “So, when there is such potential benefit to this therapy, why aren’t we even having this discussion in Canada? Because it is very likely illegal.  Pursuant to the always problematic Assisted Human Reproduction Act (the “AHRA”), section 5 (f) prohibits any person from knowingly altering “…the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants.”  Of course, the entire purpose of Three-Person IVF is to alter the sex cell of the mother so that such alteration is inherited, and not the cell with the inheritable disease.” 

I am going to go back a bit, 2006 to be exact, and talk about a time I remember sitting in a room full of women who had already been through the fertility “system” as it would be here in Canada, women who had their babies, women who had been living with their choice to use donor gametes and some who had been fighting for the Government to start regulating the industry.  They had marched with signs, written letters, made phone calls, collaborated and commiserated.  They wanted change in our Canadian system, they wanted results.  They wanted no more anonymity, no further genetic tampering, and no more compensation for would be sperm and egg donors.

Paying $ for Donor Gametes is illegal in Canada....

Paying $ for Donor Gametes is illegal in Canada….

At this time I was working on building a conference on Vancouver Island about New Reproductive and Genetic Technologies.  I was a student at the time and came across the opportunity in a round about way through an interview I was doing for my Journalism Class.  I myself at that time was just embarking on IUI using a Sperm Donor, and shortly after I starting working on the conference I got pregnant.  Through this conference I met some fantastic, yet strong minded women.  One of these women took me out to lunch.  She knew my situation and she herself had a daughter born via sperm donor in the 80’s.  She sat with me and in the nicest way she could tried to convince me to use a known sperm donor as opposed to an anonymous one.  I did not tell her we had already picked and chosen to go anonymous, and at this time I also really did not care what she had to tell me, I was a women who wanted a baby and she had no bearing on my decision.  I have since rethought that choice and written about it in many posts on my blog.  My point is, these women had conviction and they had ideas, some of which I now agree with, and some of which I feel are set in another time, a time which does not adhere to today.  I quote Sarah R. Cohen here again:  “This is just another example of how the AHRA is failing us. The potential benefits, safety, and ethical implications ought to be debated and investigated, rather than silenced without so much as a whisper by a law enacted in another time.”

My pregnancy ended in a still birth at 5 months, my baby girl had Holo Anencephaly, which meant her brain was completely absent. Let me tell you did that day ever suck.  We had wanted, waited, anguished and yearned for our baby.  It took us years to get to the point of pregnancy and the loss felt like a joke.  After all we had been through, we get pregnant with a baby with a very rare, or as the doctors called it a “One Off” diagnosis.  It didn’t make sense.  Our baby was sent off for genetic testing before we had her cremated and I also had testing done.  Results, I was not the genetic reason for this to happen, but in our situation we could never test the donor.  So we were advised to move onto another donor, and the clinic that we got our sperm donor from pulled him off the shelf, so to speak.  But now here we were, devastated and starting all over again.

May 15th - 13 weeks

My reason for telling my story is not because I think that at the point in time that we were trying to conceive we could have had any leg up on genetics or preventing any potential of a repeat to our situation, but I sure as shit know that if I had an option that i knew was out there LIKE “Three Person IVF” I would have wanted it to be my legal right here in Canada to access it.

Sarah R. Cohen uses some very key words in her post “the always problematic Assisted Human Reproduction Act (the “AHRA”),”.  On this point I could not agree more.  We as Canadians have been failed by our government and their ability to create and maintain an active, responsive, thoughtful Agency to handle these laws properly.

Not a Far off concept for our Canadian Infertile Couples!

Not a Far off concept for our Canadian Infertile Couples!

In a previous post of mine titled “Why We Need Laws and Better Understanding of those Laws” that I wrote 2 years ago I wrote this, and I feel it is very representative to how i feel about the system today:

“Another Canadian example of how laws just can’t seem to be made, enforced or even decided upon, was the creation of the Assisted Human Reproduction Agency in 2006. I remember sitting with a group of women as we were having a meeting about an upcoming conference I was part of that dealt with New Reproductive and Genetic Technologies.  When the news trickled into the meeting that this Agency was being created, there was a collective sigh of relief, it felt like this agency was so welcomed and would be just the ticket to whip our floundering fertility laws into place.  However, as with most things government the road was to be muddled and long, or short as it turned out to be.  ON october 1st of 2012 the Agency was shut down due to ‘budget cuts’ but in the 6 years they functioned, there was very little done, and as Macleans.ca reported:  “Those who work in the field weren’t surprised by the AHRC’s demise: founded in 2006, the agency has been barren for years.”  I can recall the numerous amounts of news media over the past 6 years about the agency and all of it was negative, and it seemed that the bottom line was that nothing was getting done.  In a National Post article it was said:  “agency finally opened its doors in 2006, but soon became a butt of complaints, seemingly achieving little of its mandate, while Prof. Baylis and two other board members quit in protest.”  What more is there to say…”

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The One Off Club Sucks

Azoospermia (Male Infertility) “Rare”,  Anencephaly “One-Off”, Vitiligo “Uncommon”, Von Willebrand Disease “Underdiagnosed and rare”.

These were just a few of the fun new words and terms that were thrown at me as we struggled through infertility, having kids and now being a family that is raising 3 beautiful children.

It started out with us finding out that Male Infertility was the reason we were not getting pregnant.  I clearly remember the phone conversation I had with our doctor when he told me, his exact, cold, uncaring words to me were “Your Husband Will Never Provide You With Children”!  It cut me so deeply and it made feel sick.  The next few days after that were filled with disbelief, sadness and loss. Over the next few months we agonized through sperm analysis and waited months to finally see Dr Keith Jarvi, Head of Division of Urology, Mount Sinai Hospital, in hopes of receiving good news, news that some how we would be able to find some viable sperm we could use to start our family with.  Unfortunately we were instead introduced to the term “Undiagnosed Azoospermia“.  He told us he could have 10 men with the diagnosis of Azoospermia standing in front of him, and he could tell the other 9 why they had Azoospermia, but my husband, he had no answer for.  It was “RARE”

A year or so later, after much research, we decided to go forward with a sperm donor.  After several IUI’s we got the fantastic news that I was pregnant.  Joy, finally after years of trying we were going to be a family. Fast forward several months, time to do an Amniocentesis.  The baby had been doing fairly well at check ups, I was feeling ok, regular morning sickness and other early pregnancy symptoms.  The tech who was doing the initial ultrasound before the doctor would come in and complete the procedure said they would not be proceeding because the baby was not measuring large enough.  We were confused, to do the amnio baby had to be between 14-16 weeks, we knew the exact date of conception and we were right on target.  But the baby in my tummy according to the ultrasound was only measuring around 12 weeks.  Long story short, baby was diagnosed with Anencephaly, a very rare diagnosis, as our doctor called it a “One Off”.  I gave birth to a still born baby at 21 weeks.  After years of infertility, we had lost our baby and were now part of 2 rare groups of “Uncommon” diagnosis.

As we were grieving the loss of our baby, of starting over, of infertility, I noticed that I was starting to get small patches of skin that were getting increasingly whiter, the pigmentation in my skin was slowly starting to disappear.  I went to the doctor and he said that it was called Vitiligo  a condition that causes depigmentation of parts of the skin, there really is no answer as to why people develop this and there is nothing that can be done to stop it.  You guessed it, another rare diagnosis, only about 1% of the population have this.  By this point I was starting to get tired of being part of the “One Off Club”, “The 1% Club”, “The 1 in a Million Club”.

As the years go on, we move on, and finally with a new donor we get pregnant again.  Happy but very nervous we cautiously proceed, and 40 some weeks later via emergency c-section we meet our amazing little miracle, MJ.  Born 8 beautiful pounds and healthy, she was perfect.  We were taken down to our room to recover and get to know each other, but unfortunately I became very, very ill.  My fever spiked so high and I really do not remember much of the next few days.  I was told that I would not stop bleeding and that they could not tell why.  After several days my fever went away as fast as it had risen and I seemed fine and unscathed by the whole event.  We were sent home, me a new mom who was thrilled to finally be able to have that title.  We were Mommy and Daddy and we had Baby.  But as the months went on I kept bleeding and my Doctor suggested that I might have something called Von Willebrand Disease, a fairly uncommon bleeding disorder that goes largely under diagnosed.  The only reason he thought of it was because his receptionist had just been diagnosed with it.  So here we go again, specialists, tests and another “One Off” diagnosis.  Not to mention that I had also been diagnosed with Endometriosis, that was further aggravated by this newly discovered bleeding disorder. This was really starting to Suck Big Time!

OK, so my husband has Unexplained Azoospermia, our first pregnancy ended with a still born who had Anencephaly, my skin was now about 40% covered with Vitiligo, and I had a Von Willebrand Disease a bleeding disorder……WOW, I think we were officially Gold Members of the “One Off Club”

This post may be seen as me complaining about the woes in my life, but I assure it is not, life goes on and with it we adapt and adjust to our circumstances.  We went on to have 2 more beautiful babies, boy/girl twins The Boy and Sparky, and we live a great life.  It is filled with a ton of laughter and a ton of screaming, crying and fighting kids.  I would not have it any other way, except that I wish we did not have to be part of this silly club that has placed us with so many rare, uncommon and unexplained diagnosis.

 

 

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Posted in A Mom, amnio, Amniocentesis, Anencephaly, anonymous sperm donor, ART, Assisted Human Reproduction Act, Assisted Reproduction, Azoospermia, BGM9581, DC Kids, DI, DI Baby, DI Child, DI Dad, DI Grandparents, DI Mom, DI Parents, DI Siblings, DI Story, Donor Conceived, Donor Offspring, Egg Donor, Endometriosis, fibroids, GENdMOM, Infertility, IUI, Male Infertility, pregnancy loss, Sperm Donor, Sperm Donor BGM 9581, twins, Vitiligo, Von Wiilebrand Disease, Von Willebrands Disease

Could a California bill make going from sperm donor to father as easy as filling out a form?

California legislators are hoping to make resolving the tricky issue of parental rights as easy as filling out a form.

Want to make sure a sperm donor can’t claim to be a father? Check here. And vice versa. Or at least that’s the hope of the “Modern Family Act.”

But can you really check a box to sign away your rights to a child? Perhaps, but it’s probably not going to be that easy.

Click link to read full article.   http://ow.ly/2HzhOP

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Chemicals in soap ’cause male infertility’

Chemicals in common household products such as toothpaste, soap and plastic toys have a direct impact on human sperm which could help explain rising levels of male infertility, scientists have found.

One in three “non-toxic” chemicals used in the manufacture of everyday items significantly affected the potency of sperm cells, which may account for the high incidence of unexplained infertility in the human population, the researchers said.

It is the first time that a study has found a direct effect of the many ubiquitous man‑made chemicals in the environment on a vital function of human sperm. The findings will raise further concerns about the hidden toxicity of chemicals deemed safe by toxicology tests.
Read more at http://www.wnd.com/2014/05/chemicals-in-soap-cause-male-infertility/#DRvH7IczfzKrt0br.99

 

 

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“Ontario To Fund In-Vitro Fertilization”

On seeing the headline “Ontario To Fund In-Vitro Fertilization” in the National Post, it first seems like a triumph for IVF patients, and possibly once the formal announcement is made this will be a very positive thing for many heterosexual couples who desperately want to have children and cannot without the help of fertility treatments.

url

But with all the positive, there is already negative coming from this article.  Who will get the golden ticket that will fund the $10,000 treatment per IVF round, who will be excluded as they are not seen as having “Infertility” because they are a single women or a same sex couple. Is infertility really a disease?  What other medical resources could better be funded by this money?  Why not just adopt?  So many questions with so many different answers from so many different point of views.

After many years spent in the world of infertility I have learned that nothing comes without controversy and judgment from others about the choices that we as “Infertile” people make when it comes to creating our families.

Pregnancy Test

We are accused of waiting to long to have children and that is why we need fertility treatments.  This is such an ignorant statement, many of us did not wait and after many, many years of trying yes we got older, and finally turned to fertility treatments for help.  Some of us knew that we would need the help of clinics but financially could not afford it until we were older and then again some of us were in our 20’s and early 30’s and needed the help.  My husband and I got married at the age of 28, and we started trying to have children right away, it was not until we were in our mid 30’s that we were finally successful with the help of fertility treatments.  Placing us all under a microscope and making the conclusion that we are infertile for the same reason is simply nonsense.

 

We are judged for not adopting children who are already needing homes, but those who judge this can never know the heart ache and mental anguish that comes from not being able to reproduce.  Yes it may sound selfish but it is human instinct to want to create a likeness of yourself, at least that is my opinion, and how I felt.  So we did not adopt, I reproduced and created new humans.

DSCF0519 - dec 11, 2008

Really I could go on and on ranting about why as an infertile person getting funding is a good thing, IF it is shared with all, not just  heterosexual couples who are under 35.  Give it to same sex couples and single moms by choice as well.  It will cause an entirely new level of discrimination in the realm of infertility.

But then again if I was a parent who had not experienced infertility and my child had an illness that needed medical funding to help I would probably be frantically opposing this and screaming at the government to give the money to my cause, to cure my child and not to spend it on something that is clearly not seen as life and death.

CONTROVERSY!!!!!!

My Babies

My Twins

Oh Yeah and one more thing, We had twins so we are part of the problem on the medical system that has to deal with all the multiple births due to fertility treatments.  Yup, we are that bad.  We are the selfish people who wanted children with genetic ties and we ended up with twins….I will also admit to my evil self serving desire to be pregnant and give birth……….

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Posted in 40 year old mom, anonymous sperm donor, ART, Assisted Human Reproduction Act, Assisted Human Reproduction Canada, Assisted Reproduction, Azoospermia, Canadian Law, Donor Conceived, Egg Donor, Embryo's, GENdMOM, Infertility, IUI, IVF, judgement, Male Infertility, National Post, OHIP, Ontario funding IVF, same sex couples, Single Moms By Choice, SMC, Surrogacy, twins

“Delivery Man”

I’m not really sure how I feel about sperm donation being made into comedic movies, and to be honest I stay away from them, but I like Vince Vaughan so maybe????? What about everyone else, how do you feel about this and other movies that have been made portraying families created using sperm donors?

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Posted in anonymous sperm donor, Delivery Man, DI Baby, DI Child, DI Mom, DI Siblings, DI Story, DNA, Donor Conceived, Donor Offspring, Donor Sibling Registry, DSR, GENdMOM, Half-Sibling, Hollywood Movie, Infertility, Male Infertility, Single Moms By Choice, Sperm Bank, Sperm Donor, Vince Vaughan
GENdMOM
About Me
Allison Rouble

Allison Rouble

Freelance Writer, PR Friendly, Mommy Blogger

I am a 42 year old Wife and DI Mom to 4 year old B/G Twins and a 6 year old daughter all born using anonymous donor sperm #BGM 9581 from xytex. I live with my wonderful Husband in Ontario, Canada. I am many things other then a Mom. I am a wicked dreamer, a mild mannered skunk hunter, a no nonsense chef, a lover of a glass of wine, a participating wife and a best friend. I started blogging about my crazy life as a mom to donor conceived kids back in 2009 when my first daughter was just 1 and I was trying for baby #2 (which ended up being twins). Now I write at GENdMOM.com about my life and issues having to do with the world of Donor Gametes, infertility, and the mess it can all sometimes be.

However, I discovered I had more to write about then just being a mom of donor conceived kids, I also found that I got great joy from interacting with others about being a Mom, A Wife, A Women, etc. Therefore I started another blog PandeMommium.com check me out there as well.

PandeMommium (my other blog) where I talk all things ‘Kids and Crazy’

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