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
One comment on “The One Off Club Sucks
  1. Society says:

    I wasnt with my husband when he was diagnosed, poor thing had to suffer through that news alone. The doctor decided to break it to him by saying “so now you’re wife isn’t here you can be honest, when did you have a vasectomy?”.

    Errrr??

    Battling through multiple infertility hurdles is never easy. Surviving it almost makes you want some kind of cheer squad clapping for you as you stand on top of a flight of stairs, Rocky Balboa style… Eye of the Tiger.

    It’s never easy knowing, before it happens, what your happy ever after will look like. Sometimes that’s the hardest thing to face. But you made it x

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GENdMOM
Allison Rouble’s Blog (my other blog) where I talk all things ‘Kids and Crazy’

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