Join me in supporting congenital heart defect research!
This year I will be walking in the New England Congenital Heart walk which will help to raise funds for congenital heart defect (CHD) research, something that is so meaningful to me.
When I was born my parents noticed I wasn't growing or eating like I should - they took me to the doctor and found I was born with AV canal defects. At four months old I went in for surgery - something they normally wait to do until the child is older, but in my case I have been told if I had caught a cold, I wouldn't have made it. I grew up being encouraged to be like the other kids - play sports, participate in physical activity, I had no physical restrictions. I was lucky, because others who had similar congenital heart defects can be limited in their physical activity level.
In my mid-teens, I developed Heart Block, something where my heart beat very slow all the time. At 19 I had my first pacemaker put in and remember waking up from surgery and immediately feeling how much energy I had from the pacemaker. It was life changing and I was able to live a normal life for several years after.
I met my now husband, and a few years later it was time for my batter change. The morning of surgery I was at the hospital doing normal pre-op work and the nurses informed me I was pregnant, much to everyone's surprise! They called my surgeon and he informed them the surgery must still happen because the current battery wouldn't carry me through my pregnancy. I had the surgery under local anesthesia instead of general - I remember it all. It was an incredibly terrifying and humbling experience.
Throughout my pregnancy I was followed closely by MFM. They detected that my baby also had congenital heart defects in womb which was devastating. I carried to term and had the most beautiful little girl I could ever ask for. After she was born I noticed her hands looked different, but thought she might be a little squishy from the birth. Multiple doctors came in and out over the next few days and ultimately a geneticist came in saying they believe she had something called Holt-Oram syndrome, a rare genetic mutation that effects the hands and heart. We were overwhelmed and I went into a dark place because of my new reality and what the doctors were telling us. Fast forward - Lillian's heart is doing very well, she still has a minimal PFO and VSD, which she'll carry for life. Because of what we know of from Holt-Oram and how people with this genetic mutation of the TBX5 gene's heart decreases in functionality throughout time, she will be followed by cardiology forever. Come to find out through genetic testing in the past few years, I also have Holt-Oram Syndrome and gave it to Lillian, which is what caused all my heart issues.
For several years I put myself last and did not go see my cardiologist. Right before the pandemic hit, I went in for an appointment. I had been gaining weight but always had a "reason" for this or that symptom I was feeling like shortness of breath, exhaustion, heaviness in the chest, weight gain, etc. The appointment was a routine ECG and echo, but I was picking up quickly the doctors were concerned with my results. They told me I had something called cardiomyopathy, an enlarged heart, my mitral valve regurgitation went from the previously mild to a moderate/severe grading, my EF was down to 35-40%. I had to go in for more invasive testing and decided it was best to put in a bi-ventricular pacemaker (BVP) for cardiac resynchronization therapy (CRT) to help correct my cardiomyopathy. The mitral valve regurgitation was thankfully classified as moderate with the TEE, which does not meet standards for a valve replacement and another open heart surgery, for now. My team of Drs and I decided to move forward with the BVP and I had it put in July 15, 2020.
Since then my heart has been getting stronger - it’s within normal size, my EF is back within normal limits of 50-55%. My mitral valve regurgitation is still classified as moderate so we’re working to keep it there and not progress to severe. I still have moderate symptoms of the leak in my heart like shortness of breath, fluid retention, exhaustion. I am fully dependent on my pacemaker - my heart is 100% paced in both the atrial and ventricle and that will not be reversed. I’ve had a couple complications with the pacemaker and in the last two weeks my Electrophysiologist told me I’ve had two very rare side effects with my pacemaker, neither of which he’s seen in his entire career.
I have learned so much throughout my journey and have been so grateful and humbled along the way. This is me, this is all I’ve known throughout my entire life. It is my normal. But, if I can help someone have a better normal I will do everything I can to help with that. Please make your appointments and get checked out!
It's been a long road and for me, and unfortunately it will never be over in my case, but I am proud to help raise awareness and money for such an important cause that impacts so many of us.
Together we can make a life-saving difference! Thank you in advance for your support.
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