Seven Years Later

Y’all. It’s heart month. The time when all the good heart mamas are posting pictures and educating like the amazing chd advocates they are.

Me? I’m watching a baby sort through the office trash.

But I know that looking back is good. Remembering God’s faithfulness is good. And reminding all the moms-to-be to get a simple test that could save their baby’s life is good.

February 20, 2008, was the day that our world was turned upside down. The day a simple anatomy scan for our baby turned into a journey we were not expecting.

Today, I’m trying to teach that baby girl how to read. She’s as stubborn as she was the day she propelled herself from my body in a blaze of glory. The HLHS didn’t kill us, but discerning the subtle differences between “b” and “d” may just finish us off.

It’s been seven years since we first found out, four years since her last surgery, and a mere 12 minutes since she knocked me out with her quick wit and sassy beauty.

Are y’all tired of me saying it yet?
Streams of mercy, never ceasing, call for songs of loudest praise. 

 

 

Putting the “heart mama” hat on for a bit…

A few nights ago, as The Sound of Music was being watched live around the country, my Facebook newsfeed was extremely busy. There were the positive and negative comments about Carrie Underwood and cast. And then there were other comments about a commercial… a St. Jude’s commercial to be more specific. No doubt, these are always moving commercials with a combination of celebrities and children who are in various stages of chemotherapy. But this particular commercial lit up a closed group of heart mamas that night for a more specific reason; Shaun White, the famous olympic snow-boarder, was among the celebrities.

This isn’t his first time supporting St. Jude, and I don’t in any way begrudge him his charity there. But what is extremely hard for many of us is that Shaun White is man with a congenital heart defect. He survived open-heart surgery as a child and he is clearly thriving in spite of living with a serious heart condition. Shaun White has been asked on many occasions to speak on behalf of research for CHDs. He has refused every time. He doesn’t want to be defined by his CHD (totally understandable! I don’t want Charlotte to be defined by hers, either). And yet it is mind-boggling to me that he would lend his celebrity to help some sick children, but not others to whom he has a direct tie.

And before I start getting nasty comments, please know that I am not saying this because I think it should be either/or. I know families who have children with cancer, and who have lost children to cancer. A sick child is a sick child, and while there may be varying degrees of suffering, it all sucks. Plain and simple. I guess what many of us in the CHD community don’t understand is why it can’t be both/and. Congenital heart defects kill more children each year than all the childhood cancers combined, and yet CHDs get a paltry amount of funding for research. Pediatric cancer, on the other hand, gets tons of funding (which is great) and as a result of that funding and places like St. Jude’s, the mortality rates of pediatric cancers has declined by more than 50% in the last decade (according to the National Cancer Institute). That is great news, and that is what happens when there is funding and research.

Part of this is our fault… we don’t have a cohesive organization* like Susan G. Komen (in terms of name recognition) or a hospital dedicated to the research and treatment of congenital heart defects. There is no place where heart parents can take their children for free care and treatment. (Charlotte’s first hospital stay cost more than our first two houses combined, and she was only there for three weeks. We know of families who spend months at a time in the confines of the CICU. We will be forever thankful for excellent health insurance.) There are organizations around for children with heart defects, but they are mostly small and disconnected and many are just geography-specific.

Why am I sharing all of this? Just to complain? No… I think it’s my way of raising awareness. Or maybe I just had too much time to think about it this morning after reading a letter another mom wrote to Shaun White.

I’m sharing this letter because it gives a little insight into the life of a heart parent, especially this time of year when we are being asked to give to St. Jude’s at nearly every turn.  I don’t agree with everything she says (especially about St. Jude’s in particular), but I do completely understand her frustration.

This line in particular nailed it for me: I know how horrible cancer is and have known my whole life.  I didn’t know a thing about CHD until I was offered to terminate my baby before he was born or put him in a hospice the morning after his birth.  I had no idea the fight I faced, and neither does most of America.

I don’t know that I publicly shared that particular part about our journey with Charlotte, that we were given the option to “terminate” her at 18 weeks gestation. I was informed that I only had two weeks to decide. I don’t know the data on how many parents choose this option, but I do know that they are higher than we would probably care to think about.

I think that’s another reason why CHds aren’t as well-known… childhood cancer strikes children who have been living typically normal, healthy lives. They are children and grandchildren, classmates and friends (not always, I know; babies can get cancer, too). CHDs show up in newborns, and many, like Charlotte, get through the more “dramatic” stages of treatment before they start preschool. If you were just meeting Charlotte for the first time today, you would have no idea that she has ever been sick a day in her life. Her little constellation of scars is hidden by clothes. You couldn’t possibly know that she is being kept alive by a tiny piece of Gore-Tex and plumbing technology to rival the ancient Roman aqueducts.

Again, this isn’t about elevating a childhood birth defect over a childhood disease. They are both horrible (as are the myriad other childhood birth defects and illnesses I haven’t even mentioned). This is me using my little space on the internet to share my thoughts on a topic close to our family. And maybe I’m hoping the next time you see Shaun White on a St. Jude’s commercial or on a pack of gum, you’ll think about kids with CHDs, too.

*Some of you may be thinking, “what about the American Heart Association?” What, indeed. The AHA has different chapters across the country, and while they have some discretion over how funds are spent, in general they spend less than one penny per dollar raised on research, treatment and support for CHDs. The vast majority of their funds go to dealing with adult-onset heart disease. So if you give money and time to the AHA, continue to do so; they do a lot of great work. But please don’t do so because you think that your donation is helping children like Charlotte.  If you are interested in helping, the best place is The Children’s Heart Foundation.

Wearing Red for Our Babies

I’ve asked this before, but does your child have a congenital heart defect? How do you know for sure? Some babies show signs of distress right away, some look fine until they have been home for a few days, and some drop dead on a football field having lived with an undetected CHD for over a decade.

I’ll ask again: does your child have a heart defect?

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Nine for Nine

I updated the donation links… I don’t know why it was linking to the main page before, but it’s all fixed now. Thank you!

Good morning from our luxury suite at Duke Towers! We were blessed to have our little family of four back together under one roof last night.

This morning feels like a regular Saturday morning, except that it’s Friday and Charlotte slept a whopping 14 hours last night. We are all just so happy to be all together again!

Do you remember a month or so ago when I told you about the Heart Walk? Well it is a few short weeks away, and we will be walking in celebration of Charlotte and the fact that she is a CHD survivor. We know too many babies who are still struggling with CHDs, and today even more babies are being born with heart defects.

Did you know that there are entire states that don’t have a single pediatric surgeon who can perform life-saving operations on babies born with CHDs? And doctors who treat adults with congenital heart defects are still very rare. Most adult CHD survivors are still visiting pediatrician offices for their check-ups.

In honor of Charlotte’s victory over HLHS, will you please help us help other families, babies and children?

All we are asking for is nine dollars. That’s one dollar a day for every day Charlotte was in the hospital this past week.

Or if you really want to be generous, how about $34 for the total number of days Charlotte was in the hospital all three times?

As you’re giving, remember that 34 days is a very, very short time for a baby with HLHS to spend in the hospital. Many spend months. Annabelle has not left the hospital since she was born, and she is approaching 10 months there.

So please check out the donation page for Team Charlotte and give away!

Thank you all so much for your love, prayers, thoughts and support this week. We are happy to have the surgeries over and done with, but we will always be a heart family, and we want to do everything we can to help those families coming behind us.

Heart Day

Happy Valentine’s day, y’all!

Today is the last day of CHD week, but I hope you will continue to think about the babies already born and yet to be born facing these heart defects.

I thought today I would recap Charlotte’s fabulous success at her second surgery, the bi-directional Glenn procedure.

We checked into Duke on March 12, 2009 for the surgery, expecting a 10-12 day stay.

We checked out of Duke on March 16, 2009. I think we set a record.

There were some really hard moments in between those days, specifically when Charlotte first woke up after the operation. She had horrible headaches, and she was really ticked that Tim and I weren’t picking her up to comfort her (she had chest tubes and she was on the vent, so we couldn’t). But in a short 24-hours she was back to her old self, charming the nurses and just showing off her mad recovery skills.

 

It’s been a blissful two years with no surgeries in sight, but now we are gearing up for the third and final surgery.  Charlotte has an appointment at the end of the month with our favorite cardiologist, and we should have an idea of when her surgery will be then.  We will keep you all updates as we are relying heavily on your prayers.

Thank you all again for joining with us on this journey.

It’s {still} Not My Story

I realized very early on in this journey with Charlotte that God was shaping our family as a whole and each of us individually.  I think it can be very easy for parents, and especially blogging mamas, to take on the role of primary hero/heroine in the story of our children because we are the ones who carry the burden of care.  We drive the car to the appointments; we insert feeding tubes and measure out medicine; we sit in waiting rooms and worry over incisions. And we tell the stories, whether in person, over the phone, in mass emails or in blogs.  We can’t help but become the Narrator.

But God reminded me early on that while I know a lot, and I am playing a role, ultimately HLHS is Charlotte’s story. And a lot of that story is just between Him and her.

This was one of my favorite posts from when we were in the hospital the first time. I hope you are encouraged as you read it, and remember that no matter what you or your children are enduring or will endure, God has a purpose.

1 in 100

So February has become Heart Month, and the purpose is to spread awareness about heart disease.  And within the month, (specifically February 7-14) there is a week dedicated to Congenital Heart Defects.

A lot of us parents have been frustrated at the lack of research and awareness there is about heart defects.  But we are realistic; for almost every disease and illness (save breast cancer) the people who usually are aware and active are the ones directly affected by it.  It makes sense and I’m not angry or bitter about it.  But I guess the difference for me is that a lot of people have babies, and a lot of those babies go home from the hospital without ever having a single test for heart defects.

Mamas, did your hospital do anything further than stick a stethoscope on your baby’s chest?  Your baby’s heel was pricked at least once and maybe twice to test for PKU, a disorder that affects between 1 in 10,000 and 1 in 20,000 people. But a simple, painless test could have been done to let you know if your child had a defect that occurs in 1 out of 100 children.

I know that the blood tests check for other disorders besides PKU, but I also know that none of the other disorders occurs nearly as frequently as heart defects.

And the problem is that right now most of the people advocating for this little test, a pulse oximetry test that checks the levels of oxygen saturation in the blood, are parents who already know that their babies have heart defects.  Some of us knew beforehand, some found out at the hospital after the baby was born, and some found out at home, when their babies began to turn blue and struggle to breathe.

In the US, congenital heart defects kill twice as many children each year than all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.  It’s not a competition, and it need not be either/or, but there should be more funding and research for CHDs.

One reason for the difference is that most heart babies and children don’t always look sick. Unless Charlotte has just climbed the stairs in our house, you would have no idea that she is sick. And no matter how many times I tell the story, people will ask me the same question over and over again: “does she have to have any more surgeries?” Yes. Her outer appearance has no bearing on the inner workings of her heart.

I can’t stop thinking of this little family we met while Charlotte was at Duke for her last surgery.  The parents were young, just barely out of their teens if at all.  They were an African-American couple, and their tiny baby girl was dying.  They delivered her in a hospital in Wilmington and took her home two days later, just like normal. I only mention their race because it’s even more difficult for parents of African-American babies to detect a subtle change in color. She was in distress by the time they noticed something was wrong.  She had to be airlifted from Wilmington to Duke, and her sweet parents had nothing but the clothes on their backs with them while they sat in that little waiting room for news.

That baby girl was in heart failure for THREE DAYS before her parents took her back to the hospital.  Three days. A tiny little test that should have been done and that could have been done was not done. I don’t know if she lived or not; we believe she died because her parents weren’t in the waiting room two days later, and we never saw them in the PCICU or on the floor again.

I won’t belabor the point anymore; we need help.  The babies need help.

The American Heart Association, while a wonderful organization that has done amazing things in advancing research and education on heart disease that has no doubt saved countless lives, gives less than one penny of every dollar they raise to congenital heart defect research. That’s not a lot of money.

The Children’s Heart Foundation is the only foundation that raises money exclusively for research and education on CHDs.  And this May our little family is going to lace up our tennis shoes and help them raise more money.

On May 22 we will be walking in the Congenital Heart Walk to raise money and awareness for congenital heart defects. We’ll be walking in Washington, DC, and we would love for you to join us!  Spring is a great time to take a walk around our nation’s capitol.

And if you can’t join the team, will you please consider donating to help us?

(Here’s that link again for those of you who are embedded-link-impaired: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=463888&supId=320665732).

We are looking into doing tee-shirts and some other fun things to raise money and to thank those of you who donate, so stay tuned.

And I know I’ve said it before, but I can never say it enough- thank you all so much for loving and praying for our girl and our family so much.  You are all a treasure to our family!