Why every day is heart health month at my house

February is National Heart Health Month. A month where health care workers and fitness professionals work to educate people about the prevention and treatment of heart disease. Today’s post is my contribution to Blog Your Heart Out Day; a collaboration between the American Heart Association and Fitlosophy Inc. to raise awareness about heart disease in women.

It is a personal post about my family’s experience with heart disease and as such, is rather long. I debated editing more, but found it oddly therapeutic to write. Why every day is heart health month at my house.

heart health month

In my house, we don’t wait until February to think about heart health; every day is heart health month for us. Every six hours we are reminded of the effects of heart disease.

Why?

My 10-year old daughter, Clara has chronic pulmonary arterial hypertension (PAH). Four times each and every day, we must stop what we’re doing and administer her medication.

PAH is characterized by having abnormally high blood pressure in the arteries of the lungs. It forces the right side of the heart to work harder than normal and typically leads to enlargement of the muscle and damage to the small blood vessels of the lungs over time.

There is no cure for PAH. It is is a life long and life-limiting condition. It affects women more frequently than men.

Causes include autoimmune diseases that damage the lungs (e.g., rheumatoid arthritis and scleroderma), blood clots in the lung (e.g., pulmonary embolism), heart valve disease, HIV infection and lung diseases including COPD and pulmonary fibrosis. It can also be caused by congenital birth defects of the heart.

Clara was born 4 weeks premature. A teeny, tiny thing weighing in at just 5 lbs, 3 oz. However, she passed her Apgar with flying colours and we left the hospital the day after her birth.

heart health month

Always a sleepy baby, Clara would frequently doze while breastfeeding and needed to nurse hourly around the clock. We attributed it to her small size and thought nothing of it. At her one month well-baby check up, the doctor suggested that we start supplementing breast milk with formula. Clara was not growing well (I believe ‘failure to thrive’ was the term he used) and had slipped below the 5th percentile for both height and weight.

We were referred to a paediatrician for assessment and told to increase the concentration of her formula and alternate nursing bouts with bottle feeding (breast feeding is much harder work for babies than feeding from a bottle; Clara needed both the extra calories from the formula and the easier option so as not to exhaust herself while feeding).

At her 4-month check up, the paediatrician detected a ‘heart murmur’, a little extra heart sound that was most likely ‘innocent’, but worth investigating further. We were referred to a paediatric cardiologist and after two months of waiting, finally arrived at the hospital for a series of tests (echocardiogram, electrocardiogram and blood work).

Immediately upon examining the echo, the cardiologist confirmed that the murmur ‘was not innocent’ and in fact was caused by a congenital heart defect. Clara had both a ventral septal defect (VSD, more commonly known as a ‘hole in the heart’) and a patent ductus arteriosus (PDA; the artery that allows blood to bypass the lungs in utero and automatically closes with baby’s first breath of air remained open). She would need surgery immediately. 

After a quick consultation with her team, our cardiologist called to tell us that they would not be able to close the hole until Clara was significantly bigger. (It was a fairly large hole, in a difficult to reach spot). Instead they would perform a ‘bandaid’ procedure; a surgery to reduce the volume and pressure of blood travelling from the heart to the lungs, in an attempt to prevent damage to the pulmonary artery until the definitive surgery could be performed. We had two weeks to prepare ourselves.

I recall very little about that hospitalization, other than the relief I felt when, after 3 days in ICU, they passed me my baby girl to nurse for the first time post surgery. (I took photos the whole time she was in hospital, much to my husband’s horror, to remind myself and to later, show Clara what had caused the scars on her back and chest. Out of respect for her privacy, I’ve chosen not to share them here).

heart health month

The next year passed without incident. Clara put on weight and met all of her developmental milestones. Despite her healthy outward appearance, we knew that it was only a matter of time before we’d be back, once again at the hospital, this time for a longer and more invasive, open-heart procedure.

Clara’s second surgery was scheduled for mid-July of 2004; exactly 6 weeks after her younger brother was born. Unlike before the first surgery, we met with the hospital social worker and psychologist to prepare us for what was to come; a bigger incision, a higher likelihood of complications and a potentially longer time to recovery and healing.

heart health month

What they didn’t prepare us for was the possibility that the surgery wouldn’t be the end of Clara’s health concerns.

I could write an entire post about the 11 days we spent in hospital (5-6 more than is normal for this surgery). About the difficulty the ICU staff had in getting her off the pain meds and breathing comfortably on her own. About the lack of sleep and the constant driving to and from the hospital. About 16 hour days at the hospital with an infant. About O2 sats and PA pressures and drainage tubes. About the moment we almost lost her. About not seeing her smile or laugh for nearly a month after she came home from the hospital. But I won’t. Dredging up those memories still makes me cry.

In the end, my daughter’s surgery was only a partial success. Sometime between the first and second surgeries, the PA band slipped out of position, resulting in permanent damage to her pulmonary artery. She takes medication daily to reduce her PA pressure, which is still significantly higher than yours or mine. There is no expectation that it will ever be normal and we’re ecstatic every time we see the cardiologist (now only every 6 months…) and hear the words ‘no change‘. No change means that the disease is not progressing. Not progressing is good.

Post-surgery tests revealed that the hole wasn’t entirely closed. There is a small ‘jet’ remaining, which puts her at risk for bacterial endocarditis (a life-threatening infection of the heart muscle). She must take prophylactic antibiotics before she visits the dentist and chest colds cannot be left to linger, lest she end up with pneumonia. Flu shots are mandatory for our entire household.

heart health month

She’ll never be an endurance athlete. Running for more than a few minutes leaves her out of breath.

She may never have children. Women with PAH are discouraged from becoming pregnant.

She may someday require a heart-lung transplant. We never talk about this possibility.

Upon meeting Clara, you would never suspect that she lives with a chronic heart condition. She is smart, funny, energetic, loving, tenacious, caring and empathic.

heart health month

Despite the hole, she has the biggest heart of anyone I’ve ever known. I love her with all of my heart and cherish every moment we have together (um, except for maybe the ones in which she’s fighting with her brothers…).

IMG_2772

 

Do you know any one with pulmonary arterial hypertension?

How are YOU taking care of your own heart health?

SaveSave

Comments

  1. Oh Tamara. I can’t even imagine what it must have been like for you and your family. Thank you for sharing your story here in such an open and honest way. I think that it’s so easy to be defined by our limitations but I love that your daughter isn’t solely defined by that. I didn’t know about PAH. Heart health is something that’s important to me and my family as well since heart disease and high blood pressure runs in my family. Thanks for spreading the message.
    Christine @ Love, Life, Surf recently posted…Friday Round-Up: Put on your own oxygen mask firstMy Profile

    • Christine, the funny thing is, that we really don’t think of Clara as a ‘sick’ child. She certainly doesn’t view herself that way! In fact, she wears her surgery scars like a badge of honour and will happily tell anybody who asks why she has them!

  2. Wow–thanks for sharing this story. What an amazing and strong-willed daughter you have! Heart health is so important, and spreading the knowledge can impact more people than we realize.
    Michelle @ Eat Move Balance recently posted…Protein Apple BakeMy Profile

    • Michelle, information is so important. If sharing what I know helps anybody, than I feel like it was okay to write.

  3. I love that you found it theraputic to write this post. It’s interesting to hear all of this from a mother’s perspective. In my field we don’t always see the deep parts of the kids stories after they go home. We do their echos and send them on their way and sometimes we have to keep a poker face on while we scan. Thank you for sharing Clara’s story!! PS I love the new look of the blog! 🙂
    Melanie recently posted…Flogging MollyMy Profile

    • Melanie, our techs and therapists and cardiology team members have all been rock stars! It’s so interesting when we go in these days, as she has grown so much since they first started treating her. We *almost* look forward to our check ups just to see our favourite echo tech!

  4. Wow. No words. Humbled. My problems…? Non-existent.
    Contemplative Fitness recently posted…On social cancers, building walls, and establising legitimacy…My Profile

  5. Tamara, the end of your post brought tears to my eyes. You’re a lovely woman whom I’m honored to know. Thank you for this glimpse into what you’ve faced as a mother and family <3
    Suzanne @WorkoutNirvana recently posted…Trainer Tip #2: The (Real) Best Fat-Burning Workouts and FoodsMy Profile

    • Aw, Suzanne, thanks so much for the kind words. So looking forward to seeing you again in Portland!

  6. Beautifully written, brave to share with your readers Tamara.

  7. You are so strong, Tamara. I read your words with a feeling of terror in my gut and tears in my eyes. Beautifully written. Thank you for sharing.
    Jamie @ Rise.Run.Mom.Repeat. recently posted…Heart Disease Awareness MonthMy Profile

  8. Thank you for sharing your story!! What an amazing young woman you are raising!! And, such courage that you have shown and will continue to show!
    Your story will inspire many!!
    Kim recently posted…Snow Day FunMy Profile

  9. Stephanie Robbins says:

    Wow thanks for the morning tears 🙂 All seriousness, thank you for sharing and reminding us the importance of heart health and valuing each day with our precious children.

    • Aw, Steph, sorry to have made you cry. It was so very cathartic for me to have written. And now, Clara has a place to go and read her story when she’s older! BLogging as journal!

  10. Thank you for sharing your story Tamara. I’ve never heard of this condition! I admire you and your daughter’s strength.
    Erin recently posted…Why I Workout & Eat Healthy {Blog Your Heart Out}My Profile

  11. Thank you for sharing your daughter’s (and your) story. She is lucky to have a strong mother who will always be there for her. And you are lucky to have such a beautiful and loving daughter. Thanks for reminding all of us how lucky we all are.
    Debbie @ Live from La Quinta recently posted…Friday Fitness: Adding Tempo Training Runs To Get Faster. Plus 3 Workouts!My Profile

  12. I am absolutely without words Tamara!!! Thank you so much for sharing! What an amazing daughter AND family AND mom!!!! I had not heard of this & really makes you thankful!!! LOVE the pics BTW – beautiful!!!!!!
    Jody – Fit at 55 recently posted…Blog Your Heart Out-Go Red for WomenMy Profile

  13. Oh bless her heart, sweet girl. I can’t imagine how scary that must have been when she was little. Of course moms never want their kids to be sick. Looks like she’s got a strong mama and great role model.
    Melanie @ Nutritious Eats recently posted…Heart Disease: Go Red and Blog Your Heart Out!My Profile

    • Thanks Melanie. It seems like a lifetime ago, but remembering always puts the minor stuff into perspective.

  14. Thanks for the very open post… information can be so important with this topic.
    Pavement Runner recently posted…Playlist Thursday and #LoveMusicMy Profile

  15. Oh, Tamara I don’t know what to say…although, I am sure you are not expecting something but I want to say something. You are a blessing. Your daughter is a blessing.

    Thank you for letting us get a little closer glimpse of what the FITKNITCHICK is really made up of! Simply Lovely! 😉
    Kathy recently posted…Friday FlipMy Profile

    • Kathy, thanks for your kind words. I was not really expecting comments, but appreciate everyone’s good wishes.

  16. Thank you for sharing your daughter’s story. I can’t even imagine…

    I work with cardiac and pulmonary patients who are all older and a few have had PAH. Those few have had bigger hearts and smiles than anyone I’ve ever seen. Your daughter sounds just the same. 🙂
    Angela @ Happy Fit Mama recently posted…Blog Your Heart OutMy Profile

  17. Oh wow! Tamara! I don’t know what to even say besides, heart issues are NOT COOL! Your daughter is seems like such a sweetie. Thank you for sharing!
    Katie recently posted…Random Ramblings..My Profile

  18. Tamara thank you so much for sharing your story. I just have no words….So important to share information on heart disease!
    Michelle @ Running with Attitude recently posted…Here we go againMy Profile

    • Thanks Michelle. Yes, a very important message and to remind people that it’s not just elderly men who fall victim to it…

  19. When we set out to become parents, we have these images in our heads of what our children will be like. Rarely do those images match reality. The real child is always more lovable, unique, precious and heartbreaking than anything we can conjure up with our imaginations. Whenever I meet another parent who had to go through years of wondering and stress, I feel less alone, and think, “that parent understands.” And in the end, I’ll bet you wouldn’t change a thing about Clara. That’s how unconditional love works.
    AlexandraFunFit recently posted…Improved Sleep and Comfort: Technogel PillowsMy Profile

    • So true Alexandra. It’s funny though, that even though the images never entirely match up, what we end up with is always so much more than we thought it would be! And you know what? Life’s challenges make us stronger and more empathic people, don’t you think?

  20. Thank you so much for sharing your story Tamara!! My heart aches for you and your daughter, but deep down inside it is the love that you give each other that matters the most. As a nurse I believe in the advances of healthcare and hope they will be good to you and Clara in the future.
    Toni @runninglovingliving recently posted…The Lactating Runner “Guest Post” by Marie OrtizMy Profile

    • Thanks Toni. There have been so many advances in cardiac care in just the past 10 years. We are ever hopeful that better, longer acting drugs, with minimal side effects will still be developed!

  21. Wow. Thank you for sharing such a personal part of your family’s life. What a strong little girl you have! She is lucky to have you as a mom and I have no doubt that your commitment to health and fitness will continue to benefit her as she continues to grow and live life to its fullest!
    Jenny @ simply be me recently posted…FitnessGlo Giveaway WinnerMy Profile

  22. Oh wow what a beautiful girl! She looks like such a wonderful kid. My Grandpa had a hole in his heart as does my uncle. My uncle has had quite a few surgeries, but has otherwise lead a normal and active life. Your daughter will be in my prayers. Xx
    Jess recently posted…Happy Birthday to Me!My Profile

  23. Orthomol Arthro Plus Joint pain in knee i know, that it is necessary to make)))