Don't Be Afraid to Ask for a Heart Screening

Today, I read another story about a high-school athlete who dropped dead during practice from an undiagnosed, undetected congenital heart defect. The 17-year-old was at lacrosse practice. The very sport my high-school-athlete son plays.

I am relieved to know now that my son Martin has a healthy heart. Earlier this year, I finally asked our pediatrician to screen him for congenital heart disease (CHD). I had let the question nag me since 2005, when my younger son William was diagnosed with Scimitar Syndrome. Martin was screened in March, after I read news stories about five student athletes who collapsed and died while playing their sport.

I'm so sad for Daniel Valenson's family. They had no way of knowing. The heart defect he had (anomalous left coronary artery from the pulmonary artery) is very rare -- affecting 1 in 50,000 to 1 in 300,000 live births -- and often, the first symptom or sign of trouble is sudden cardiac death.

While Daniel's particular heart defect is very rare, congenital heart defects are not rare. They are frighteningly common, and yet, our children are not routinely screened for them at birth or as a requirement to play organized sports, although there are efforts to change this. In Chicago, for example, privately funded screenings have saved the lives of area athletes.

Congenital heart defects strike an average of 1 in 100 babies. Heart defects are THE MOST COMMON of ALL birth defects. More common than the ones you hear so much about -- and many of which women are routinely screened for during pregnancy -- such as spina bifida, Down syndrome, cleft lip and palate, and abnormal extremities.

Congenital heart disease affects about 35,000 children each year in the United States. Of those, about 3,500 die before their first birthday. Nearly twice as many children die from CHDs in the United States each year as from all forms of childhood cancers combined.

Don't be afraid to ask your pediatrician or family physician for your newborn, infant, toddler, young child or your student athlete to be screened for congenital (or acquired) heart disease. 

While any physician may be able to identify a congenital heart defect, the most qualified and specially trained physicians in this area are those who are board-certified in pediatric cardiology. Certification matters!

Congenital heart defects can be found through:

• physical examination (hearing a heart murmur)
• pulse oximetry screening 
• echocardiography,
• electrocardiography (EKGs)
• CT scan 
• MRI 
• Chest X-ray 

Another startling fact about congenital heart disease: About 10 percent of all CHD cases that are evaluated in adult congenital heart clinics are first diagnosed in adulthood — that means there are adults walking around today who have undiagnosed congenital heart defects.

  

Screening does not require invasive testing. Diagnosis and treatment saves lives. Now more than ever, people with congenital heart disease are living longer, active, normal lives. 

Ask.

Happy Birthday, Mom!

Happy Birthday to my wonderful, phenomenal mother! 

Before I tell you a totally cool story about her early career days, let me tell you why she's my wonderful, phenomenal mother: Because she was there. Always. And she still is. Not just for us kids, but our kids, too. 

She was and is a great role model in every way. I wrote about that in "Who's Your Role Model." And this is where I pick up on the career tale ...

So. The story. My mother was one of the first two women in the Leon County Schools to serve as an elementary education administrator. Mom served as an assistant principal in several Leon County elementary schools, including Oak Ridge.

It was all going swimmingly until she and her colleague learned that their male counterparts were making a lot more money than they made! So, the two women confronted the superintendent of schools about equal pay. (Go, Mom!) The conversation went something like this:

The superintendent said, "Well, you don't make as much because I figure you wouldn't be doing the same kinds of things the men would do." (Remember, this would have been in the late 60s.)

My mom replied: "What assignments wouldn't we do? Are you aware that on one occasion I escorted a sheriff's deputy to a classroom so he could take a 5th grader into custody?" 

Did I say, "Go, Mom!" yet? Oh, it gets better!

My mother continued: "And are you aware that one of our students was crossing campus with a pistol in his hand and intending to shoot one of our teachers? I stopped him and confiscated his gun, a .38. Now, what is it that we wouldn't do?"

Whoa! That's my mother!

You rocked it then and you rock it now!

Happy Birthday, Mom!

Three Little Words: “There’s a HEART!”

My favorite job in the world (in addition to being a mom and wife, of course) that pays only in sheer joy is the work I do with BrokenHearts of Florida. 

I love my heart families. No, I don’t think you get it: I love my heart families. They may or may not know it, but I would do anything I humanly could for any of them. I worry about them, pray for them, cheer when they hit milestones, cry when things go wrong, and rejoice in the miracles that they all are. I love. my. heart. families.

I especially love days like today, when I hear those three precious words. Even after three years, I never get tired of hearing them … “There’s a heart!” My own heart jumps and I get goose bumps. Because someone I adore is about to start a new life with a new heart.

I stop immediately and pray – for the person receiving the heart and for their family; for the family who made the difficult but incredibly generous decision to donate their loved ones’ organs; and for the team of physicians, nurses, social workers and other transplant-team members who, on a moment’s notice, step into action to make the transplant possible, to make it happen like clockwork.

I’ve been blessed to hear those three little words for Jori, Mykala, Cat, Timmy, Wyatt, Ramsey. I long to hear those words for Rachel, Chloe and Carmen.

Today, though, right now, I rejoice. Today, there’s a heart! There is a heart for Emily. Tomorrow, Emily starts a new life with her new heart.

Rejoice evermore. – 1 Thessalonians 5:1

Emily receives her gift of life tonight, a new heart.

 

Happy Heart Day, William! Five Years!

Five years ago today, we gave our son over to the pediatric heart team with the UF Health Congenital Heart Center so they could fix his heart. Some days it feels like it was just yesterday, other days like it was a lifetime ago.

But one thing that never wavers or changes is our gratitude. Five years later, we are still so grateful to our pediatrician Dr. Dean Dalrymple and local pediatric radiologist Dr. Charles Williams, who finally diagnosed William at age 1, after he'd been so sick for a year. Grateful to Dr. Jay Fricker for taking care of William's heart until Shands hired a pediatric heart surgeon. Deeply grateful to that pediatric heart surgeon -- Dr. Mark Bleiweis -- for choosing Shands and for Shands choosing him. Because of these doctors, William is a happy, healthy, soon-to-be second grader who doesn't have a care in the world.

William, immediately after surgery to
repair his partial anomalous
pulmonary venous return, June 29, 2006.

William with big brother Martin, the day after surgery.
Uncomfortable, but loved listening to his bunny's heart.

Sitting up in a chair the day after surgery.
Not a happy camper, but when his brother
asked, "Does it hurt?,"
William replied, "No, not much."

Hanging out in bed on Day 2, still feeling sore, still hooked
up to chest tubes that drained blood from his chest cavity.

Back in the chair again on Day 3. This
time he gives his Grandma a smile.

Day 4 and feeling good. Getting ready
to go home! Yes, surgery was on a
Thursday. We were HOME by the next
Monday! That's how William and
Dr. Bleiweis roll.

"Seriously, Dr. Bleiweis. I am SO ready to go home!"

Saying so long to his favorite PICU Nurse Josh Campbell.

Since surgery, we have yearly checkups. We have echos.

We have EKGs.

Sometimes, we have CT scans of our chest
and visit our surgeon so he can see how much |
we've grown and how awesome we're doing
(doctors love to see that with all their patients!)

We even go to Gainesville to walk in the AHA
Heart Walk with our pediatric cardiologist
and pediatric nurse. We love Shands and AHA!

But mostly, we simply revel in every day. Feeling blessed that everything is going so well, and that William is happy and healthy. If you'd like to read more about William's journey, go to www.carepages.com; his CarePage name is MasterWilliam.

Happy 5th Heart Day, William!

We love you so, so much!

Parenting a Heart Kid

This is not William's X-ray, but it is an image
of someone with Scimitar Syndrome.

First of all, it turned out to be little more than a fragile, superficial vessel that popped and bled. William’s fine and we, his parents, are thankful to be nothing more than overly tired after a late night in urgent care.

But when your asthmatic, heart kid starts coughing up bright red blood after a coughing episode, you try hard not to work yourself into a panic. That’s what happened last night.

William was minding his own business, taking a shower, and abruptly started coughing. OK. Not unexpected: he has mild/moderate, chronic asthma, and it’s been triggered and exacerbated lately by a lingering respiratory virus, brutally hot weather and intermittent exposure to the smoke from Florida’s wildfires.

When my husband went to check on him, though, he was caught off guard by the bright-red, kind-of-big splotches of blood coming out when William coughed. And it kept coming. Husband went bonkers, scared witless. I tried hard to be just a “regular” parent – ah, he probably just popped a vessel somewhere, or maybe it’s really just a nosebleed traveling down his throat. But I’ll call Capital Health Plan Urgent Care; we’ll see what they want to do.

When I talked to the nurse, I told him my 7-year-old son was taking a shower and started coughing and then there was blood. The nurse didn’t seem overly concerned and asked if my son had been sick.

“He’s had a cough on and off for a few weeks. Dr. Jones saw him a week ago Friday and his lungs sounded a little junky, but when we went to see his pediatric pulmonologist that Monday at Shands, she said he sounded really good,” I told him casually.

I was not going to panic. Just because he’s a heart kid does not mean it’s a big-deal serious thing. I was going to play my “he’s just a regular kid” card, even if I died a little inside doing it.

“Oh. Um, why does your son see a pulmonologist at Shands?,” the nurse inquired.

“He has chronic, but mild asthma, and he has scimitar syndrome. He’s really fine, though. He’s been very healthy this year,” I explained.

“What was the name of the syndrome again?,” the nurse asked?

“Scimitar syndrome. It’s part of his partial anomalous pulmonary venous return, a heart defect,” I said.

“Oh. Has he ever coughed up blood before?,” the nurse asked.

“Years ago when he was a baby and had pneumonia, and then I think it happened once after he had his heart repaired several years ago,” I answered.

“Oh! How far do you live from our clinic?,” he asked.

“About 10 minutes or less,” I answered. “If I have to choose between going to an emergency room or waiting to see our pediatrician in the morning, I will choose to wait and see our pediatrician. I think he’s fine.”

The nurse put me on hold. A minute later, he came back and said, “We’ll wait. Please come now.”

And we did. We saw Dr. Henry Gunter, whom we’ve seen before, and he’s a wonderful, kind and patient physician. He had read William’s chart. He knew William had asthma and he knew he had a “great vein anomaly.”

Dr. Gunter checked William’s ears, eyes, nose and throat. His throat looked red, now raw, but like it had been painted red. Dr. Gunter decided William probably had popped some small vessel in his throat, but just to be sure, he sent William for a chest X-ray.

Aside from the wire that has popped open at the base of William’s sternum, everything looked fine. And even the wire isn’t a big deal. Dr. Gunter was gracious and glad it was nothing more than a popped vessel. So were we!

I give myself credit for appearing to be just a calm, typical parent last night. But I won’t deny that the heart mom’s little voice kept whispering in my ear, “He’s probably fine, but he’s a heart kid with respiratory issues. You can just never really know. The fact is, you might be home in an hour or you might be admitting him to the hospital. You just never know.”

That’s what it’s like. That’s how it feels when you’re the parent of a child with a congenital heart defect, or any other chronic illness. You work hard every day to be just another parent; but there’s always a little piece of you somewhere feeling a twinge of panic when something out-of-the-ordinary occurs.

Because it’s true, you really never know for absolute sure.

Happy Merry Mother's Day!

If you need to find me on Sunday, I'll be hanging out here all day ...

Oh, wait! Not THERE! Gross!
That's what it looked like six months ago!

I mean, HERE! 

 

Ahhhh, now THAT'S more like it!

 Thank you to my own personal Pool Boy, The Hubs!

Happy Merry Mother's Day to All of You!

Bathtubs Make Good Beds Sometimes

I came across this book today on Twitter: Go the F@#k to Sleep, a thought we parents have all had at one time or another about our children, who often, will not. go. to. sleep. 

Don't lie. You know you've thought it! 

And author Adam Mansbach knows it. "When 'Goodnight Moon' just isn't cutting it ... one dad and novelist has written a bedtime story to warm the hearts of sleep-deprived parents everywhere: 'Go the F@#k to Sleep.' "

Children and sleep. Oh, the tales I could tell. I'm a co-sleeping parent, from way back before co-sleeping was such a hip thing to do. I did it because I was desperate and co-sleeping accomplished my goal of getting (barely) enough sleep!

Seriously. There's a reason my husband nicknamed our first son, "Draculita." If I tried keeping Martin awake during the day, he was overtired and too crabby for sleep at bedtime. If I let him sleep during the day, he was too wide awake to go to bed at a decent time -- say, sometime before 3 a.m. Oh, I tried letting him cry it out. Once. And for weeks afterward, I couldn't round the corner into the next room without him screaming over my perceived disappearance.

For everyone's sanity, I stopped exclusively breastfeeding and let my husband start getting up with the baby during the night and bottle-feeding. Martin didn't care he was getting a bottle. Breastmilk, formula, he didn't care as long as it filled his belly. But he sure cared about (not) going to sleep in his crib. He wouldn't have it.

The crying and screaming were relentless, no matter how hard my husband tried. I'd turn off the monitor, close the bedroom door, stick plugs in my ears and shove my head under my pillow. But there was no escaping the miserable cries of a baby who wanted to play at 2 a.m., but was instead being rocked to sleep.

I confess. I thought it: "Oh, child. Please. 'Go the F@#k to Sleep.' "

I couldn't take it anymore. I grabbed a big, fluffy bed comforter, a blanket and an armful of pillows. I threw them in the bathtub in our master bathroom, flipped on the ceiling fan, pushed the door shut and curled up in a ball. Just the humming of the fan and my nice, new, white, porcelain-coated cocoon. Ahhh, peace.

It's the only way I survived those early months!

Several years later, a close friend had a baby girl. My friend looovvvvves her sleep. Even as an adult, she sneaks in an afternoon nap whenever she can. (And let me tell you, we are all happier people when she gets a nap.) I knew after first baby arrived, she was gonna be hurtin' for sleep. And it was not going to be pretty.

I'll never forget one of our first conversations after her baby arrived:

Me: "Hey! How're you feeling? How's that whole sleep thing going?!"
Her: "I'm soooo tired. Oh, my God. You know how I am about my sleep. And she. won't. sleep. She just cries. I'm going out of my mind!"
Me: (chuckling under my breath) "You'll be OK. Sleep when she sleeps. I know it's not your philosophy, but if you get desperate, try letting her sleep with you. "
Her (obviously not listening to me): "Is she ever going to sleep through the night? This is killing me. Oh, my God. You were so calm with Martin when he was a baby. I'm a terrible mother, Karen. Some nights, I swear, I would never do it, I love her so much, but oh, my God, some nights, I just want to throw her out the window! How did you ever not want to throw Martin out the window?!"
Me: "I did! But, hello, I didn't go around telling people that!"
Her: Huge, audible sigh of relief.
Me: "You know. The bathtub makes a very good bed sometimes." 

Grasshoppers and Horses

Yum! Grasshoppers and Horses are a sweet combo!

Grasshopper cookies make me think ... horses.

Growing up, I rode other people's horses through leasing agreements -- Copy Cat, Goose, Mini Dude, and my favorite, Bandit. After Bandit was shipped back to her owners in Atlanta, I suddenly found myself 15, horseless and seriously heartbroken.

That's when mom spilled the beans -- I was getting my own horse! On May 22, 1980, as a belated birthday gift, my mother gave me a beautiful, gray mare named Irish. How perfect was that -- my birthday falls on St. Patrick's Day?! It was kismet. She was rotten when I brought her to Coventry Farms, but over the first year, we learned a lot about and grew to trust each other. We were a great team.

My beautiful, gray mare, Irish. Her show
name was Shades of Gray, so named
after a song by The Monkees.

I rode competitively and loved it! Not just the riding part, but the hanging out with Mom at horse shows part, too. She would rise before dawn (and let me tell you, my mother  is not a morning person!) to braid my horse's mane and tail, fighting arthritic hands. And every horse show, she would pack our favorite cookies -- Keebler's Grasshoppers, thin, wafery, mint-chocolate goodness. 

Thank you, Mom, for all those wonderful weekends of braided manes, shiny riding boots, nervously holding on to my horse by the reins, anxiously watching me jump fences when surely you wanted nothing more than to hide your eyes! (I realize this now that I'm a mom.) 

It all happened 30 years ago, but often feels like yesterday. Whenever I see, smell or eat Grasshopper cookies, I think about my horse shows, remember Irish, and feel very grateful not only for the outlay of money it took to support my habit, but especially for the investment of time, love, and enthusiasm my mother gave during a crucial part of my life. My days at the barn are the best, best days of my adolescence.

First show at Killearn Stables, Walk Trot, first place.
Eventually won champion for the day. The pony is Copy Cat.

Mini Dude looking perky circa 1977 at the Springtime
Tallahassee Horse Show at the Leon County Fairgrounds.

Goose! Crazy-looking, dappled, Appaloosa
mare. Sweet girl. We won championship
that day in our short-stirrup classes.

My Lady Bandit hanging out having
fun on the weekend.

Bandit looking AWESOME after a show
at Brookwood in Thomasville. It was
an off day, but still a lot of fun.

My Son is a Teenage Athlete

Martin at one of his lacrosse games. That's my boy!

I’m not an alarmist and I don’t over-dramatize situations, but learning about the sudden cardiac deaths of four teenage athletes has had me a little on edge. My son Martin is a teenage athlete and his brother William has a congenital heart defect (CHD).

Ever since William’s diagnosis of scimitar syndrome on March 10, 2005, the question of whether Martin’s heart is as healthy as it has always seemed has been stuck in the back of my mind. I’ve left it there the past six years because I’m neither alarmist nor paranoid.

Well. Until I followed and read the recent stories about Wes Leonard, 16; Matthew Hammerdorfer, 17; Javaris Brinkley, 16; and hearing a personal story about 17-year-old Sarah Landauer of Gainesville.

I know the debates about young athletes and heart screenings. I know there are no guarantees with anything. Any one of us could be hit by a bus on our way home tonight.

I’ve read the checklist of signs, symptoms and histories for student athletes. That we can check no to most of them does little to assuage my anxiety. But a full-on physical check-up will ease my fears about the risk of sudden cardiac death.  

Martin plays an aggressive, high-intensity sport and he has a brother with a CHD. Martin practices lacrosse with his junior-varsity team 15 hours a week, and he plays one to two games per week, and as the starting right attack, he plays 98 percent of the time in each game. I worry. And it's not unfounded worry.

So, on March 10, 2011, six years to the day of William’s CHD diagnosis, our pediatric nurse gave us the dates for Martin’s EKG and echocardiogram. Martin will have his annual physical plus an EKG on today, March 18, William’s due date. Martin’s echocardiogram is scheduled for March 22, William’s birthday. (I’m really not superstitious, but I hate it when dates and numbers fall freakishly together like that.)

I don’t expect anything but to find out everything is normal with Martin and he gets the whole-hearted all-clear to play sports as much and as intensely as he wants.

But right now, he’s teenage athlete who plays vigorous sports. He has a brother with a congenital heart defect. And within a two-week period recently, four teenage athletes have collapsed playing sports. It’s time for Martin to get that EKG and echocardiogram.

I Raise Awareness for My Son!

Monday is the first day of Congenital Heart Defect Awareness Week. And as the infamous SpongeBob Squarepants would say, "I'm ready. I'm ready. I'm ready."

Rather than repeat everything I just wrote in a post on a blog I moderate, I'm going to send you over to the Broken Hearts blog, Straight from Our Hearts.

Thank you, Ramsey Brown, for agreeing to be interviewed today for a TV segment. Thank you, Kim Rooks, for repeating your message for support -- for the first time ever, our local office of the American Heart Association is donating drinks for our Broken Hearts Open House next Tuesday.

Thank you to all of our fantastic heart families who make Broken Hearts the awesome organization that it is. You all serve as ambassadors and we are so thankful for you.

And thank you to my beautiful son, William, whose heart we love and wouldn't have any other way.