We are moms, we are wives, partners, sisters and daughters – and we are caregivers. We care deeply, some times we care so much about others that we forget to care about ourselves. I belong to a special society of caregivers. Our initiation process was rough, downright RAW. We didn’t apply for membership, it was dealt us, like a hand of cards are dealt at a casino. Our group knows no borders, doesn’t segregate by color, religion, marital or social status. We are all equal in this community – regardless of our tenure.
Membership is lifelong – and beyond. The end of life doesn’t equal the end of membership in this society. We are together for the long haul, through peaks and valleys, highs and lows, hope and fears. We are HEART MOMS, we are moms of children with heart conditions, disease and defects. We know and share the risk factors of heart disease! We give care #FromTheHeart.
We know our children’s heart measurements, function and stats “by heart.” We can recite medications, treatments and diagnosis like a middle school child says the Pledge of Allegiance. Our children’s symptoms are ingrained in our memory, any change in their behavior sends us into “high alert.”
Our phone stores the contact information we already have memorized. While most parents only need to know the number for Poison Control, we also have cardiologists, pediatricians, countless specialists and hospitals on speed dial. We have become students of our children’s heart condition. We know what to expect of their future, however long or short. The reality that has become our normal, can seem crippling to outsiders. We live #FromTheHeart, fully and completely.
We know the signs of heart failure in children:
- Trouble breathing (shortness of breath, labored breathing, grunting/ “coughing”)
- Poor feeding or growth
- Excessive sweating
- Low blood pressure
- Low energy
We have watched enough Grey’s Anatomy to wonder if the signs of heart attacks in adults are:
- Older males
- Overweight, usually balding
- Grabbing their chest/ heart
- Numbness in the left arm
- Yelling that they are having a heart attack, usually in a restaurant or right outside an ER
- … or perhaps that is only the Hollywood version of a heart attack.
We go through days, weeks and months caring for our medical child, our family and some times even friends, if we are lucky enough to still have some of those left. We ignore our own body’s cries for help, discount symptoms of distress as “lack of sleep”, “not enough exercise” or “poor diet.” Who really has time to go for a walk, drink water and sleep when a little human’s wellbeing relies so heavily on our presence?!
Until one day, in your Facebook support group for heart moms, you happen to mention that menopause has probably set in. You casually share about your sudden fatigue, sweating and just overall discomfort. One of the other caregivers reach out to you personally. She is afraid to alarm you or overstep some unwritten rule of personal space on social media, yet she feels you should go to the doctor.
She tells you/ reminds you, she EDUCATES you that the signs of a heart attack in women are VERY different from what we have spent years watching for in our children – or even what is shown on Grey’s Anatomy! This sweet (newfound) friend reminds you that there is a genetic component to your child’s heart condition. Apparently we had been so hyper-focused on keeping our children well that we forgot to care for the caregiver!
Your friend shares life saving information from the National Heart, Lung, and Blood Institute’s (NHLBI) The Heart Truth® program. The Heart Truth has for years worked to raise awareness about women’s risk for heart disease. This program becomes your saving grace, a place for you to turn for information and encouragement. No longer is your focus solely on your children, but (almost) equally on yourself. Caring #FromTheHeart requires that we also care for the caregiver.
February is one of my favorite months. It is the time where all the heart moms reach out and offer support beyond what we do throughout the year. We connect #FromTheHeart and get together to share our thoughts, worries, triumphs and struggles. My gift #FromTheHeart this year is a vow to stay in touch with my kindred heart moms. The support we give each other reduces stress levels. We share “best practices” and specialist referrals, which in return ensures that our children receive the best possible care. Our friendships
#FromTheHeart help improve our children’s heart health, as well as our own.
We learn valuable information from The Heart Truth about heart disease in women:
- Heart disease is the #1 killer of women.
- Of the women who died in 2013 (the latest data available), one in four women in the United States died of heart disease.
- Eighty percent of women ages 40 to 60 have one or more risk factors for heart disease.
The risk factors for heart disease in women:
- Someone in your family passed away suddenly before the age of 50.
- There is a history of heart disease in your family.
- You have
- high blood pressure
- high blood cholesterol
- diabetes or pre-diabetes
- a history of pre-eclampsia during pregnancy
- You are
- a smoker, current or past
- physically inactive (less than 2.5 of physical activity per week)
- overweight or obese (BMI of 25 or greater)
Don’t miss the signs of heart attacks in women. SOME women have the classic chest pain and left-sided numbness. However many women experience “silent” symptoms that can easily be brushed aside, or discounted as something much less serious.
The six signs of heart attack in women:
- Chest pain or discomfort, not limited to the left side. Women have reported it as feeling like an elephant is sitting on their chest.
- Pain in the arms, back, neck or jaw. The pain may come and go, wake you up out of your sleep, be gradual or sudden. It is not limited to the left side, which is one big difference between the signs reported by men and women.
- Stomach pain. This pain can be confused with heart burn, the flu or an ulcer.
- Shortness or breath, nausea or lightheadedness. Exhaustion may set in without expending any energy. Suddenly you have trouble breathing doing tasks you did effortlessly just last week.
- Sweating. Breaking out in a cold sweat without there being a reason for it.
- Fatigue. Women have reported a “tiredness in the chest”.
Know the signs! You may just save a life – either your own or a friend’s!