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

UPDATE: DNA, Genetics and Half-Siblings are all we have to put the Puzzle Pieces together!

UPDATE:  Even though I wrote this post sometime ago, it still rings significant in my mind today, as I look at my kids, more then a year older then when I first posted it. It is a post that reminds me that we will forever be searching for answers. When I originally wrote this I only knew of two other families with children conceived from our donor, but I am so happy to report a year later we have now added two more families to that list. In total we are five families, with nine half siblings between us. We consist of single moms, two-mommy families, and a hetro-couple.  We all choose to use donor BGM9581 to create our own little families, but in doing so we have also had the added pleasure of painting a much bigger picture.  Although none of us have had the opportunity to meet face to face our lives will forever be connected thanks to the world wide web. I am hoping that I can add another update tot his post next year with the good news that we have been able to connect and add more families to our portrait.

 

Finding half-siblings for my kids has been very important for me, in truth it is why I started blogging, in almost every post I would put our donors number (BGM 9581 by the way) and it is why I joined the DSR (Donor Sibling Registry) before my first was even born.  I feel I have been lucky enough to find two half-sibs. One on the DSR, and one because of my blog.  I know that there are at least 25 reported births as of earlier this year, but unfortunately Xytex has decided to stop giving out the number of births per donor to us parents, so my count stops at 25 (knowing I have 3 of the reported.)  I feel a huge chunk of a family missing from my life when I hear that number, because those are children related to my kids, and without even knowing who they are I feel connected to them.  It’s a family tree born out of unknowns, but one that I believe can grow and flourish with love if given the chance.

how-to-draw-a-cherry-tree_1_000000001948_5

I did not realize how connected we all were until I got a message from one of the moms I know who has a 7 year old boy who is the half-brother to our children.  She emailed me to let me know of a medical condition they had discovered, nothing serious or life threatening, but something they had been trying to find answers to for the past 5 years.  I was so happy to receive that email, because as it turns out MJ has been struggling with the same symptoms for the past 3 years and we also have been knocking on doctors doors trying to find out what exactly is wrong and how we can go about fixing it.  It was a relief to hear that the answer was simple and now I feel like I have a positive direction to go in order to get her feeling better.

Of course I know that my children will have half of their genetic makeup and health history missing, let’s be honest the health profile you get from the donors are pretty vague.  For example Sparky and The Boy both have very soft teeth which at the young age of 3 is causing decay.  The dentist told me that it was genetic so I dug put the donor profile and looked to see if there was any dental information.  Here is the extent of the information I received on his dental health and other random Health related information:

Healthy Teeth:  NO

Eyesight: GOOD  (however next line down is: Near or Far Sighted: NEARSIGHTED)

Sinus Infection: YES

Food Allergy:  NO

Hay Fever Allergy: YES

Hernia:  NO

Well you get the idea, lots of YES and NO answers only and no explanation when there is a YES answer.  Also I must say I am extremely impressed with the NOTE/DISCLAIMER they place at the bottom of the “Donor Health Information” section, and I quote:  “The medical and social history was provided by the donor and cannot be verified for accuracy”! Gee that’s reassuring.  But they are very eager to let you know which celebrity the donor most resembles, in our case it’s Vin Diesel, I suppose that’s important to know?

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I know that some of you might be saying “Ya, but didn’t you get that profile before you had the kids, and didn’t you realize how vague it all was?”  The answer is Yes I got the profile. The question should really be “did I really care how vague it all was when I was in the throws of wanting to have a baby no matter what the circumstances were? The answer is NO….I was in a baby making fog, I thought everything would be just fine as long as we loved the baby and made a happy home.  But I digress, that is all babbling’s for future posts (and for previous posts like “D is for Donor Sperm and Decisions”).

It’s like a puzzle that has to be pieced together.  The only problem is not all the pieces come neatly boxed up and available for easy construction.  These puzzle pieces come from many different sources, you have to dig and search to find just one small piece or clue to figuring out the entire picture, and sadly for most the puzzle will never be fully complete.  We all know how annoying it is to being so close to finishing a puzzle to find out that there is one piece missing, imagine if that puzzle had dozens or more missing pieces.  We would take it back to the store and ask for our money back.  As a donor conceived child there are no returns, you are handed this life and it becomes up to you and your parents (hopefully they are willing and eager to help) to find as many of those illusive pieces you can and to put together as much of the picture you can.

puzzle-pieces

That is what I hope I can do for my children.  Gather as much info as possible to help them.  Wether that turns out to be enough is yet to be seen.

I know this post may seem a little happy go lucky and lovey dovey at times with its notions of us all being one big happy family with all the half-siblings and their parents, and I know reality doesn’t always want to work alongside our fantasies, but for a fleeting moment as I write this I can dream can’t I?

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Posted in anonymous sperm donor, Assisted Reproduction, BGM9581, Canadian DI Families, DI Baby, DI Mom, DI Siblings, DI Story, DNA, Donor Conceived, Donor Offspring, Donor Sibling Registry, DSR, Egg Donor, GENdMOM, genetics, Half-Sibling, Infertility, IUI, IVF, Male Infertility, Puzzle Pieces, reported births, Single Moms By Choice, SMC, Sperm Bank, Sperm Donor, Sperm Donor BGM 9581, Uncategorized, Vin Diesel, Xytex

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

Posted in Uncategorized

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

 

 

Posted in Uncategorized

“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.

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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

“What to Say When Your Child Asks Where Babies Come From” Especially when those babies are Donor Conceived

I was interviewed for an article in the Canadian Family magazine and although it did not end up being exactly what I thought it would be I hope it is a start for people finding me, those who want to talk and share and ask questions and make the whole donor conception world a little less scary and secretive.

Click the link to read all about it……

What to Say When Your Child Asks Where Babies Come From

answering-where-do-babies-come-from

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Posted in anonymous sperm donor, Assisted Reproduction, Azoospermia, BGM9581, Canadian DI Families, Canadian Family Magazine, DI Baby, DI Child, DI Mom, Donor Conceived, Donor Offspring, DSR, Egg Donor, GENdMOM, Infertility, Male Infertility, PandeMommium, Single Moms By Choice, SMC, Sperm Bank, Sperm Donor, Sperm Donor BGM 9581, The Bird's and the Bee's
GENdMOM
About Me
Allison Rouble

Allison Rouble

I am a 41 year old Wife and DI Mom to 3 year old B/G Twins and a 4 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. Most importantly I found an online world of friends and family. Therefore I started a

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

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