Heart Month

It's true, February is heart month. One may think, that's obvious, because Valentine's Day is February 14th and we gear our focus towards all things love. There's flowers, chocolates, Galentine celebrations, elaborate date nights, and a focus on being kind - I mean the conversation hearts have always had that one right. Who is with me? But in all seriousness, February is labeled "heart month," because for one month our country focuses on heart health. This particular topic is near and dear to my heart (no pun intended :)) for many reasons. For the first decade of my nursing career, I focused my professional energy on taking care of kids with congenital heart disease (CHD), my mom suffered and survived a heart attack 4 years ago, and my daughter was born with a mild form of congenital heart disease. This month is important and the awareness it raises is even more important.

I've talked about my daughter in an earlier post, but I will dive further into her congenital heart condition for the sole purpose of show casing that many kids are born with "broken hearts" - 1 in 100, actually. So when Matilda was born, she was born with a medical condition called Wolff-Parkinson-White Syndrome (WPW). What does that mean? That means when the conduction system in her heart formed, it formed multiple pathways for the heart to beat. So for the lay person, there is one line of conduction from the top of the heart to the bottom of the heart and every time the heart beats, it follows that one line. But in Matilda's case, she has an extra pathway(s), so sometimes the electricity in her heart would rapid fire in a circle around the top half of her heart, allowing her heart to beat at 300bpm, also known as supraventricular tachycardia (SVT). You do not have to be a cardiologist to know that is entirely way too fast for any age. Unfortunately, we did not learn about this condition until Matilda was 6 months old.

When Matilda was 2 moths old, her pediatrician heard a heart murmur, which eventually lead us to learn about her SVT. Her murmur was a hole or connection that never closed after birth. We monitored it for 3-4 months before thinking that was what was causing her heart to have some failure, and at 6 months of age, we (her medical team, Andy and myself) opted to have it closed. Now, you can imagine my anxiety surrounding this scenario given what I did for a living at the time. IT WAS THROUGH THE ROOF! The procedure to close the hole in her heart went swimmingly - zero complications from start to finish. But after her procedure at around 1am(ish), I heard her monitor red alarming (that's a scary alarm BTW) and what sounded like a herd of elephants running down the hall. My heart sank as I saw my baby girl turn a color grey that my kids were not supposed to be and then proceeded to projectile vomit all over the room, all while her heart was beating at 310bpm. I nearly lost it. She quickly self converted back to normal sinus rhythm but those 20 seconds felt like 20 hours. She then went in and out of SVT 3 more times before the change of shift at 6:45am. Then it dawned on all of us, we had found the root cause. We knew exactly why she had not grown, would barely eat and struggled to nurse, and why her heart was showing signs of heart failure - she had WPW and needed adequate treatment.

Luckily for us treatment is simple and fairly painless. Matilda takes a medication called Propranolol (it blocks the heart from beating too fast) three times per day - with breakfast, right before her afternoon nap, and right before bedtime. We see a cardiologist every 6 months and Matilda wears a holter monitor for 24hrs every 6 months to make sure the medication is still working. Outside of those things, you would never know. Easy, peasy, lemon squeezy. BUT she is one case of many and is on the minor side of the bell curve. Many babies are born needing heart surgery within the first week or two of life and have a much more complicated trajectory than our little heart warrior. And many children for some known and unknown reasons acquire different forms of cardiomyopathy leaving them with few options other than a heart transplant. We are so thankful our little lady is thriving, smart, sassy, silly and tough, just how we want her. But, I'm here to tell you congenital heart disease is real, it is the most common form of birth defects, and it does not discriminate.

The #1 thing you can do outside of supporting loved ones affected by CHD, is supporting organizations like the Pediatric Congenital Heart Association. They fund important research, they fight in Washington for adequate healthcare coverage for these kids and they support families in all kinds of ways that are really suffering from devastating CHD diagnoses. And if you are a parent of a child with CHD (or any chronic illness) advocate like crazy for your little person. They need that more than anything.

Now on to my mom and advocating for women's heart health....

On September 20, 2015 I received a phone call at 5:30am from my step-dad to inform me that my mom had a heart attack in the middle of the night, but she was fine. I immediately burst into tears - I mean the amount of tears spewing from my eyes could have filled Lake Michigan - I'm certain of it. Steve, my step-dad kept saying "no mom is okay, she's totally fine, the procedure worked!" I mean thank God for that, but the mere thought of her ALMOST not being fine sent me into a downward tailspin. I literally cannot imagine living one day without my mom. I call her almost every day, I definitely call with every single baking/cooking question, and she is my first call when I'm worried, scared or need some positive reinforcement. And she can set me straight from time to time, which we all need. ;) (Sometimes I can have a potty mouth and that she does not appreciate).

I remember thinking what in the h*ll can I do from here? I'm 700 miles from home and the only place in the world I wanted to be was sitting next to my mom in her hospital bed. But I met my husband at church with our then 6 month old son. It was such a blessing that Andy had to usher at church that day, because the whole sermon was about trusting in the world around you and there is more good than hate, because God is good. A quote from the sermon that day was "think about any medical procedure happening at any given time, and how every member of the team has to trust one another, otherwise there would be way more failures than successes." Talk about UGLY CRY guys. It was intense, and after church the hubs and I decided that I needed to just go home so I could help take care of my mom when she was discharged. It was one of the best adult decisions I've made. I finally had the opportunity to show up for my mom in a way that she had consistently shown up for me. I was happy I could be there.

Fast forward 4 1/2 years and my mom has a new lease on life. And a new perspective. She worries less and let's go more. She makes a concerted effort to come see her grandkids and travels all over Iowa to watch the ones that live close to home. She enjoys more moments. And appreciates the little things. To say that happened for a reason is weird to say, even though I think everything happens for a reason, but there have been silver linings that have come from her scare for sure. Mom I'm so glad you survived that day, I'm so glad the local community hospital acted quick and I'm so glad the interventional cardiology team had a dialed in on call plan and met you at the door when you arrived at the appropriate hospital.

Ladies (and gentlemen), the things you can do to prevent cardiac disease: know your numbers, get yearly physicals, exercise 30 minutes 3x/week, eat a balanced diet, and above all do not ignore common symptoms like radiating arm pain in either arm, crushing chest pain to the point of loss of breath, feeling lightheaded, nausea and piercing pain in your neck, jaw or stomach. Had my mom ignored her symptoms for any longer, she would not be here. And if you knew of the logistics of getting her to the appropriate hospital, you would realize it's a miracle she's here today. You can also support organizations like the American Heart Association and attend your "Go Red For Women" events held in the Fall for most locations.

With all that said, I wish you many happy and heart healthy years to come. May we celebrate each heart healthy year every February- it is "heart month" afterall. ;)

Cheers,

AFK