Girl Valves

My Beautiful Boy...

I have been meaning to post some pictures of Colin - we think he is so wonderful, beautiful and, of course, intelligent...

But she won't get into West Point!

Well, we had our fetal echo this past Tuesday.  It was okay.  Initially, we were told that the chances of passing ANY heart defect to our child would be about 10%.  I prayed for no heart defect but hoped for a "good" one should we find something.  The tech took some measurements, left the room, and came back with quite a disturbed look on her face.  After I fought the lump in my throat, she told us we had a big baby.  That's it?  That's what the disturbed look is for?  The little one is measuring about 2 weeks ahead of "schedule".  No big deal.

Next, the peds cardiologist took a long look at all heart structures and determined that the pictures looked smarmy (that's technical medical term in case you all were wondering).  She thinks the valve looks more like a fish mouth (bicuspid) than a Mercedes-Benz sign (tricuspid).  While she can't be certain until after the baby is born, she's giving us 50/50 odds on having a baby with a bicuspid aortic valve.  Damn, and I was hoping for a Mercedes-Benz.

I was initially quite bummed but quickly realized that the defective valve in and of itself is not a big deal.  We could have coarctation, Tetralogy of Fallot, transposition of the great arteries.  We might have a BAV, we might not.  My husband took it a little harder and wondered what would happen should our child want to go to West Point.  Ummm, honey, if he/she doesn't get into West Point, we wouldn't have to be concerned about him/her being deployed to war. 

Anyway, I think I've pretty much opted for c-section...just for piece of mind.  Hope all is well with everyone!

Validation

My name is Kim Caroline and I’m 38 years old.

I grew up corn-fed and silver-spooned in Indiana, inheriting privilege and a penchant for self-reinvention. My father, “Heir Doktor” was a poor German immigrant who ripened into a neurosurgeon, tennis player and Civil Rights advocate. My mother, the daughter of an artist and business professor, was a brilliant biologist and interior designer who knows the nomenclature of anything living or gold-laden. My brothers and sister have similar spirits of courage, desire and reinvention.

I earned an undergraduate degree in Humanities from Indiana University and a graduate degree in American Studies from Columbia University where I lived adjacent to the silvery Twin Towers of the World Trade Center. After college, I worked for the US Judiciary Committee and two Midwestern congressmen on Capitol Hill. My best memory as a Plebe is that I pushed legislation that became law combating telemarketing crimes against the Elderly.

I’ve lived an extraordinary life, (as defined by American ideals of money and mobility). My husband and I had sizzling jobs during the most incendiary financial era in US history. (We got rich quick). We were part of the thirty-something .com Jet Set, owning a $2+MM home in suburban Washington, DC, traveling First Class overseas and employing a household staff the size of Sri Lanka.

We were invincible, and God was superfluous.

I'm a Mom

I am over the moon to tell you that I have a daughter!  Her name is Guo Yi Hui and she is gorgeous!  She was born on July 30, 2004 and she is in the Guanjxi Province in China. 

Now if only we could get on the plane to China today!

My Story

Hi Everyone!  My name is Amy and I am 31 years old.  My sister, Karen, has already posted here.  Growing up, I was told that I had an innocent heart murmur.  No big deal, right?  Fast forward to January 2004.  My daughter, Gianna, was 5 months old.  I had a gall bladder attack and decided to see the doctor.  At the appointment, the doctor asked "Do you know you have a heart murmur?"  "Oh yes....it's innocent", I answered.  He sent me for an echo.  Turns out I had a bicuspid aortic valve with severe aortic insufficiency and an aortic root dilation measuring over 5.  I needed my valve and aortic root replaced right away. 

The decision to choose a mechanical valve was very easy for me.  I was more scared than I had ever been in my life, and the thought of a second open heart surgery anytime soon was just more than I could handle.  But more importantly, I had my daughter to think about.  This wonderful, perfect child, whom I love more than I could ever imagine loving anybody else, needs me.  Not just to feed her and provide for her, but to love her in a way that only a mother can.  So jeopardizing that is absolutely out of the question. 

I have seen a high risk OB-GYN about having another child.  He said.."Yes, you can have a baby."  But my cardiologist is not so hot on the idea.  So, in the end, I think that my husband and I have decided either to adopt or go with a surrogate.  (But that is not written in stone!)  I still hold out faint hope that a new drug will replace coumadin in time for me to have another baby.  In the meantime, I love reading our shared experiences.  Thank you!      

          

OUR Blog

Wow, we have twelve GVs that have posted so far!  And we have more to come.  All of your entries have been fascinating.  I can't get enough!  Every time I see that someone else has posted, it is like Christmas, don't you think?

I want to say one thing.  This is not MY blog.  This is OUR blog.  So if you have any suggestions, ideas, whatever, let me know and I'll see what we can do. 

Also, in case you didn't know, you can insert photographs in your posts.  So if you want to post any pics, you can. 

One Year Later and I Wouldn't Change a Thing

It has been one year and a little over a month since my valve replacement and I'm happy to say that I've never regretted the mechanical valve.  It has been a battle to get my PT/INR levels just right, but I'm getting there.  For the past several months, I've been going once every two weeks, but it isn't bothersome.  The coumadin clinic is five minutes from my house and it is like going to visit a friend, only my friend sticks my finger with a needle to make me bleed. 

I still feel as though I will never do pregnancy.  Which is pretty funny that I now have the option to have bio children, but I'm choosing not to.  Who would have thought? 

A couple months after my valve replacement, we started the process to adopt a child from China.  It took five months of paperchasing, and then six months of waiting, but in the next few days, we will find out who our daughter is.  Come Monday, Tuesday, or Wednesday we will get a call that we've been waiting for for a long time.  We will find out our child's name and we will have a picture of her.  I will be able to see what my baby looks like! And then in June we will travel to China to bring her home. 

When I think back to the last three years, how painful it was to learn that my heart was too leaky to give birth, coming to terms with the grief, then the surgery...I feel like all of it has been worth it.  If I had to go through all of that to be lucky enough to given the opportunity to parent my daughter then it was so worth it.  I might not have known it back when I sitting on my couch crying, but I know it now.  I wouldn't change a thing and I never thought I'd say this, but thank goodness for my f'd up mitral valve! 

I'll keep y'all updated.  I can't wait to introduce my daughter to you! 

xx,

Michele

Michele Continued/ The Valve Choice

The valve choice was without a doubt the most difficult decision I've ever had to make.  It sucks because there is not a right or wrong answer to the valve choice.  For me, the valve choice revolved around children.  Did I want to do pregnancy?

To make a long story short, I chose the mechanical valve.  My plan was to adopt first, and to do pregnancy later on.  However, I woke up from my surgery and the first thing I thought was, "Nope, pregnancy is not for me."  Valve replacement is a tough surgery, and all I knew was that I never wanted to risk having to do it again.  Plus, I'm a baby and knowing that I would have to give myself shots twice a day during the pregnancy scares the hell out of me.  Pitiful, I know.

Anyway, the best way for me to explain what how I came to my valve choice is to share my journal entries from the time that I was agonizing over what to do.  It is long, so I won't blame you if you skip it.  The entry titled "The Bionic Choice" is where I finally made up my mind, if you want to skip to the end.

Also, I apologize that the entries are not easier to read.  I gave up on trying to make the titles and dates of the entries show up in bold, so it looks like it all runs together.  When I'm feeling more patient, I'll try to fix this. 

We obviously were Grandma's favorites

I tried to post this once before but apparently I did something wrong...so here we go again. 

My Grandma had six children.  When she was in her 60s she was diagnosed with a bicuspid aortic valve which was replaced with a Bjork-Shiley.  She died at the ripe old age of 89 of cancer.  We loved her more than words can say and miss her everyday.

I would have been honored to inherit the traits that were so characteristically "Granny Fanny".  She always remembered names, birthdays, and anniversaries (although her pronounciation was sometimes off...my then fiance-now husband, Collin, smiled even though she called him Colon...like part of your GI tract or Colin Powell).  She was a devout Catholic who never missed a day of saying the Rosary.  She was active in her Church and social group up until a few months before she passed away.  You couldn't pull her away from the TV or radio when the St. Louis Cardinals were playing ball.  THOSE were traits that made Grandma, Grandma.

Typical of Grandma, she didn't want to keep anything to herself.  She encouraged my sisters, brother and I to: "Share and share, alike".  She believed in equal portion sizes for all and fairness in play.  In the spirit of sharing, Grandma passed down a trait that didn't define who she was when she was alive, but plays a huge role in our lives now that she is gone...she passed on to my sister and I, her bicuspid aortic valve.  Well, not her ACTUAL valve.  It's not sitting on the bookshelf in my office, although that would be a good conversation starter, wouldn't it?

My name is Karen and I am 28 yrs old.  I got married in October 2002 and we all lived happily ever after...well, at least until January 2004.  My sister, Amy, (who will also be blogging on Girl Valves) was diagnosed with a BAV.  Her diagnosis led to some serious action on the heart surgery front but that is her story...I will let her tell it.  After Amy's diagnosis, my mother, siblings, and I were all given echos to test for a BAV.  Fortunately for my mother and siblings, but unfortunately for me, I was the only other family member to have a bicuspid aortic valve.

After my TEE which showed mild/moderate regurg and an aortic root diameter of 3.5, my husband and I decided to try and have children while my heart was still in decent shape.  We met a few days later with a high-risk OB who assured us that pregnancy with a bicuspid aortic valve should be a piece of cake...relatively low risk and completely managable by my regular OB.  Just for fun, he ordered a thrombophilia panel.  A week after our meeting, we found out I was pregnant.  My husband and I high-fived all around the house and thanked God for our blessing.  Surely, a baby was part of the divine plan for us...or was it?

I miscarried that pregnancy at 6 weeks.  A probable ectopic though no one knows for sure.  As irony would have it, I was released from the hospital on Mother's Day.  I celebrated with a couple of cold ones (okay, so maybe it was 6 or 7...whose counting?) surrounded by my family.  Shortly thereafter, the high-risk OB called to tell me that I had tested positive for homozygous MTHFR.  Basically, my Mom and Dad each passed on a mutated gene that predisposed me to multiple miscarriage, placental abruption, stroke and other blood clotting issues.  Wow, thanks, Mom and Dad...couldn't I have inherited Mom's great love of cooking or perhaps Dad's handiness around the house?  As it stands, I can't cook to save my life (but I can pick some great restaurants to eat at!), and the only handiwork I'm good at is handing someone else tools.  On a good note, MTHFR is easy to treat with high doses of folic acid and baby aspirin.  So, it really is an afterthought for this story.

Six months after our miscarriage, I became pregnant again...and overcome with fear.  My mind raced between thoughts of miscarriage and bad hearts.  Was my heart okay?  Was the baby's heart okay?  If we fast forward through a couple of uneventful months, it brings us to today.

I am currently 27 weeks pregnant and all seems well.  My last cardiology appointment showed no change between my echo last year and this year.  The baby is scheduled for his or her fetal echo in two weeks.  The docs say there's a 10% chance of passing on ANY heart defect to the baby.  I am praying that we have a baby with a great heart (and as a sidenote to God, I am praying that if the baby does have a defect it's not life-threatening).

The big dilemma now is this:  Both my cardiologist and OB seem to think that a vaginal delivery will be just fine but have agreed to a c-section if I so decide.  While I would like a vaginal delivery, I'm concerned about it's effects on my heart.  And no one can seem to give me solid answers on that.  I want statistics. I want studies (although you won't see me volunteering for the study that asks for almost healthy women with heart defects to determine whether pregnancy and vaginal delivery damage the heart further....in fact, I think that would be a violation of some kind of code of ethics...either way, a study would be helpful).  Since apparently there aren't statistics or studies on this kind of thing, I am offering up a prayer to my devout, caring, Cardinal loving Granny for her to help me with this decision.  I hope she hears me.

I realize I've been long-winded and if you've read this far, you are far more patient than I...but thanks.  My story is different than the many stories I have read on this site but I'm hoping it will help others.  Be on the lookout for Amy's post.  It should be a good one.  Thanks, Michele for allowing me to post on your blog.  What a great idea.

Life's a journey

I want to thank Michele for these sites. I feel like I know you so well. I stumbled upon your first website last year as I was researching my choices for mitral valve surgery. I really thought I was the only one in the whole world having to choose between the tissue and mechanical valves. Needless to say, you provided me with a lot of the courage I needed to make the decision to have surgery.

I am 34 years old and have battled lupus since the day I got married 8 years ago. My "heart" issues began in November of 2001 when I ended up in the hospital with congestive heart failure.

It was at this time that I discovered that the minor "murmur" I had always been told that I had was actually more serious than I ever imagined. I was told that I had rheumatic fever as a child or that the lupus had caused inflammation of the valve. Using a heavy dose of steroids, the doctors were able to reduce the inflammation and get me out of immediate danger. I was told that I may need to replace the valve in the future. I didn't pay much attention. I just wanted out of that hospital.

During the past 8 years, I was never well enough to attempt pregnancy because of the lupus. However, my luck began to change at the end of 2003 when I started feeling better and my doctor thought I was well enough to get pregnant. He said that I had to get clearance from a cardiologist. I didn't think anything of it. I was flying. I had buried any dreams of having children deep inside of me. It was surreal and almost a miracle that I was being told to get pregnant.

Of course, I failed the stress echo miserably and the cardiologist warned me to never get pregnant. I fell back into the dark hole I had briefly climbed out of. He mentioned that I could fix or replace the valve but wasn't too enthusiastic about choosing open-heart surgery just to have the chance to have children. I wasn't listening. Like Michele, I could only focus on not breaking-down in front of him.

Anyway, we got a second and third opinion and that's how we arrived at the surgeon who performed my surgery in April 2004. He was more encouraging than my own cardiologist about my chances. He thought it was nothing to have 2 heart surgeries. Easy for him to say. We went with his advice and, after agonizing over the tissue/mechanical decision, I decided to go with a tissue valve.

The surgery was successful. I don't want to ever do it again...but I know I have to. Tell me this? Why do they shave you "down there" if they are going to work on your heart? Humiliating!

Six months after the surgery, we got pregnant. I have never felt such a sense of true happiness in a long, long time...maybe ever. We got to see the little bleeping dot that was our baby's growing heart at 6 weeks. But, unfortunately, I lost the baby at 7 weeks.

We are now trying again.

That's my story. I should also mention that I have an angel from God as a husband. I have awesome parents too.

Thanks for listening. I'll keep you posted on our journey.