I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Sunday, February 12, 2012

CHD Awareness Week--Faces of CHD: Sydney's Journey

Sydney is Madi's sister, if you haven't read yesterdays story please do it's about Madi's journey with dilated cardiomyopathy & transplant. Their mommy Linsey is one of the strongest mama's I've met online! She's amazing ♥

Even though all of the genetic screening that was done on Madi showed no genetic markers for cardiomyopathy, her doctors felt that it was very important to screen Sydney often to be sure that it did not manifest itself in her.
She had her very first echo at about two weeks of age in Minneapolis, and words cannot describe my relief when we were told her heart looked great.  At a little over a year old, she had another echo.  This time we did it at Mayo Clinic because we had transferred all of Madison's care there following her transplant in late 2009, and it was easier to just double up with Madi's already scheduled appointments.  Sydney was sedated this time, as she was just over a year old and was not so sure about the idea of getting an echocardiogram done.  When it was over, our cardiologist told us that her left ventricle was slightly on the large side, but that since her heart function was fantastic, we were in the clear still.
Then came the two year checkup.  On October 14th, 2011, Sydney went back to the Mayo Clinic for another evaluation.  And then the other shoe dropped.  Dr. Driscoll pulled up the echo report for Sydney and told us "Sydney's heart is not normal.  I am afraid that she also has dilated cardiomyopathy."  I have never felt so helpless in my life.  At that moment, all I could do was run.  Run from my feelings, from God, from the doctors, from my life.  I went into the bathroom and laid on the floor, sure that I was going to puke all over.  I sobbed and sobbed.  Why was this happening again?  Why us?  Why BOTH of my children?  Why, why, why?
I finally composed myself and rejoined my kids, hubby and doctor in the exam room.  I took a deep breath and asked what our plan of attack was going to be.  Was her heart function bad enough to need a transplant too?  How sick was my baby?  Why was this happening when the genetic screens on Madi came back normal?  How was I going to do this again?
Dr. Driscoll informed us that there were a few things on our side.  One, Sydney's heart function at diagnosis was at where Madi's was at its very worst.  A normal heart's ejection fraction (the measurement of the squeeze of the heart) is between 55 and 70%.  Sydney's was at around 24%, so in essence her heart is pumping at half capacity.  The heart has dilated and enlarged to compensate, so her stroke volume (amount of blood input & output) is normal, which means that technically she is not in heart failure.

When Madi was diagnosed, her heart was so bad that she had had strokes.  Sydney did not.  Sydney was perfectly asymptomatic and remains that way today.
Starting that very day, we began an extensive medication regiment for Sydney.  She takes medication that controls blood pressure and medication that lessens the workload on her heart.  She also takes aspirin to help thin her blood and hopefully prevent any blood clotting incidents.
There are plenty of kids whose heart function improves on these drugs.  We are hoping that Sydney will be one of these children.  Her latest echo showed that her ejection fraction is right around 31%.  The cardiologist said that in essence her function was the same as it has been, but to me to go from 24 to 31% is a victory.  As long as we keep up in this fashion, we should be ok.  As long as her heart function stays stable or gets better, that is.  So where do we go from here?
Well, we have submitted large amounts of blood from all four of us to a geneticist at Mayo.  He is doing a study on familial dilated cardiomyopathy.  Who knows what that will bring.  They may discover that we carry a gene that we didn't know we had.  Maybe they will map a new gene based on our DNA profile.  For now, that's all up in the air.  Not much has changed in the way of research on dilated cardiomyopathy in 50 years, so it's still a lot of flying by the seat of our pants.  Not ideal, but what else can we do?
We continue to pray.  And pray.  And pray.  That Sydney's heart function will be better and better every visit that we have with the cardiologist.  That she will not need a transplant.  
I kind of feel like after all we have been through, we deserve it.

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