The Davis Family

Three years ago, about this time of year, I was coming up for air a bit from the trauma of Sadie's birth and whirlwind medical circus. Mostly, I was dealing with bills that had accumulated from a million different providers under a trillion different umbrellas. Medical bills suck. But during that time, I found a wonderful resource and friend - Christy - who helped me to navigate the insurance waters. She, quite literally, saved us thousands of dollars. Thousands. I've never been able to repay that kindness - probably never will be able to in any significant way. And I'm not the only person she helped. In our tiny community of CHD folks in Richmond, Christy leads the way through her involvement with Mended Little Hearts and her steadfast support for families in crisis. Her husband, Steve, rounds up men with kids with CHDs for support and friendship. This family is awesome and an inspiration to many. Yes, I have mad love for the Davis family.

Christy's daughter, Sydney, is the reason she became such an advocate in this community. Sydney is three, and has Tricuspid Valve Atresia (TA) ---meaning her tricuspid valve did not form and she essentially has a three chambered heart. You wouldn't know it by looking at her most of the time - she's full of energy and OH SO Cute.

Today Sydney's family got some news that was definitely not what they had hoped for. The answers aren't in yet - a catheterization will provide more information on Thursday, but suffice it to say it has left the family reeling. And everyone in our community who loves Sydney. Please keep her in your thoughts and prayers, send good mojo, or whatever you do to send love her family's way. Thursday seems like forever when you need answers yesterday.

Bonding with Sadie

It's CHD Awareness Week, which I have been actively involved with for the past three years. This year, however, I did nothing to prepare, and I have to admit, I've let the CHD Blog run far behind in posts. But it's for a good reason. I've been bonding with the very reason that brought me into the nightmare world of CHD.

Having a baby you can't hold in the early days has a huge impact on your ability to bond. Ask any parent of a premie who's hospitalized a long time, or anyone who has a child with a chronic, life threatening illness in the early days. Sadie missed out on those early caresses - I couldn't touch her for more than a week beyond brushing a fingertip across her hair without her heart racing. I didn't hold her until she was almost three weeks old. She could not tolerate touch, really, for months, unless she was bundled tightly to minimize it, and bounced to draw her attention away from the fact she was being held. It's difficult to bond under those circumstances.

And that's part of the reason I have been such a 'warrior' about Congenital Heart Defect Awareness. I felt so robbed. If she had been diagnosed, as she SHOULD HAVE been prior to birth, I wouldn't have lost as many days as she stabilized. I have felt that the lack of knowledge, the lack of simple tests, had cost me the bond with my baby. And I was pissed about it. And when I get pissed, I take action to make changes. I don't know what caused this to be my genetic makeup, but it's what happens when I'm faced with something I can't understand, or I think is wrong, or I feel I can make better.

I always felt so awful about not having that special bond with Sadie that I had with Katie in her early years. I craved those moments I'd had with Katie as a newborn - when she'd gaze up from nursing into my eyes and just stare. How she'd snuggle into me and fall fast asleep. How she smiled in those early weeks. With Sadie, it just didn't happen. Every day was a battle. I was, to be honest, disappointed. Let down. Sad.

That's not to say I don't love Sadie more than I can express. I love her so very, very much - coming so close to losing someone makes you realize how much you want them to be in your life. I would content myself with watching her sleep (when she did). Time marched on, and month by month she became a little easier to deal with - allowing me to touch her without crying. Eventually making eye contact. Hugging. Kissing. She became a fairly normal toddler - full of moxy, highly temperamental, but funny and sweet. Still, we didn't have "that" bond.

All of a sudden, three and a half years later, it has finally happened. In fact, I can almost name the moment. We went out on our first mommy-daughter date to the movies a month or two ago, and we sat. We chatted. And the communication began to grow. Now she's attached to my hip (literally, she's sitting her on the couch beside me, on my hip as I type), snuggling constantly and telling me how much she loves me a hundred times a day. And each time I tear up a little bit, so thankful for these moments that were so long in coming.

As for CHD Awareness, I will continue to promote the need for better testing - simple tests can save lives, and maybe even just one mom can have more of a bond with their baby than I was able to have. So I'll champion it. But I won't be putting the hours into it this year. It is time for me to step back and be thankful. To hang up the gloves I've had to keep on to fight for so long for Sadie, and just enjoy her and revel in my new found bond.

The day this all started...

Three years ago, almost to the day, I headed to the hospital, thinking I was in labor. They sent me home. A few hours later I came back, and within 7 minutes Sadie entered the world. Then we got the news - she was gravely ill and would require open heart surgery as soon as she could be stabilized.

Before that time I would have never dreamed of blogging and sharing my personal life with the world. Hell, I hadn't even considered that my child could potentially have a heart defect. I didn't know how one second could change your life forever.

Since then I've written about the joys and horrors, the stress and the recovery our family faced in those crucial first months... chronicling hearts torn open and put back together, both figuratively and literally. Then it grew beyond that, to include the hopes and fears for my daughters, then updates for long-distance family and friends to finally, what it is or isn't today - a journal I turn to to release small bits of my brain to the world.

This time of year brings back so many bittersweet memories - the agony of watching Sadie being taken away, not knowing if she made it to UVA alive, the joy of the first moment I hold her, almost a month later. More than anything, my heart sings a song of celebration that overrides those sad memories, though they still persist in the background. Because more than anything, tomorrow is a day of joy over how far Sadie has come and the miracle of her survival.

Double Guessing Yourself

It's funny the timing of things...

When my kids get sick, I have a tough time gauging how really sick they are. If there's a fever, I usually take them into their pediatrician for a look. I often feel like a hypochondriac. What can I say, I've developed a distrust of the medical community in general, which has been combined with my tendancy to worry. With reason (Sadie's many medical mishaps and oversights, Jason's recent brush with death), I know, but a worrier none the less.

There's a flip side to that. Being a rational person and recognizing the current stress levels and prior experience, I often discount my gut and ignore symptoms until situations escalate further than they should.

The past 6-8 weeks is a great example of what I'm talking about. The experience at the hospital with Jason left me feeling I couldn't trust the simple diagnosis any longer. I ended up taking Sadie in a few days after his initial visit - to the ER no less - because she had 5 or so similar symptoms to his presenting illness. Her pulse ox then was around 94. They said it was likely because she has a heart defect and had been sick. I dismissed the episode of being one of neurosis and exhaustion.

The kicker is, Sadie hasn't really been well since that time. She's been OK, still full of spunk, but not quite at full steam. She's had several episodes of labored breathing, but in conjunction with a cold, congestion or a nasty cough. She just hasn't seemed to shake it. I've noted three seperate times that her nailbeds were a bit bluish. I chalked it up to her coughing and congestion. I thought perhaps it was pneumonia, it wasn't. Bronchitis, nope. I had lots of ideas, but never once allowed myself to think about the heart as being part of the issue. Yet, inside, I've been in turmoil, worried that something bigger is being missed. I tell myself it's because I'm surrounded by CHD-related things right now, and over vigilent with her. T

Today was visit #6 in 3 weeks for Sadie to the doctor. We saw one of our favorites, and she took a lot of time, checking her pulse ox, listening to her heart and lung function, asking the right questions. She felt Sadie was, indeed, experiencing periods of cyanosis ("blue" syndrome - when the body doesn't oxygenate as well as it should. Which shouldn't be happening based on her reports from the cardiologist. (Guess who's switching cardiologists after we're over this hump?)

An uneducated guess is that perhaps Sadie's pulmonary hypertension was never really resolved as her cardiologist told us over two years ago (without checking for further symptoms no less). I always ask for her doctors to check at her pulse ox at well visits (it's a simple, fast and "free" test), and usually it's 98-100, but when she's ill, it easily drops to lower 90s. If she's really sick, it's in the upper 80s.

I know it's nothing "serious" compared to the many challenges some of my friends face. I feel silly, to be honest, when I worry about Sadie's heart. My heart friends have children who on a GOOD day are in the upper 80s for sats. So I have a hard time feeling urgency with my child, who is often called "fixed" in the CHD community.

I feel like this is a bit of a push from above. A reminder that I'm on the right track in working to create some change for CHD patients and their families. And an even more poignant reminder to trust my instincts as a parent. To calm the brain, and let the gut do the talking when it comes to their healthcare.

Side note - I really missed Lobby Day today!

CHD Awareness Week Day 2, 2009

I'm totally bummed I can't make it out to CHD Lobby Day tomorrow. Sadie's got something that looks a lot like pneumonia, PLUS my lead teacher is sick at the school. Feeling a bit blue about it.

Check out yesterday's CHD Blog entry if you haven't. It's by a friend, Josie, (5 Minutes is the title) and it's amazing. If you're a parent who's ever been through a life-death situation with a child, you will totally relate.

That's all I've got in me tonight. I've got my mind on lots of people who need support and energy for tomorrow - the Reynolds family (daughter Charlotte, 3, has brain tumor) and my friend Christy and yet another big appointment for Harlie tomorrow. Send some good mojo their way.

Awareness Week

It's CHD Awareness Week again! In the past year I've met many heart patients and parents, medical staff and support groups, many of whom I know will be lifelong friends. I created the CHD Blog (check out today's entry - an amazing post by my friend Josie!) as a neutral information dissemination tool, and it's really taken off. But I wanted to do more.

This time last year I, for the life of me, could not understand why there were such paltry efforts at a national awareness campaign. I didn't get why there were so many groups, with animosity between some.

Well, now I know. I jumped in full steam last year, volunteering with a variety of groups, testing the waters to find out who was out there, what they were doing and how I could help. I worked on national efforts for cohesion and strength within the groups. I spent a lot of time trying to mend fences and bring people together. I spent even more time behind the scenes working on projects that no one else had "time" to address. And in the end, after all the work put in, I threw my hands up in frustration and stepped back away from most of the groups I'd so willingly jumped in to help. Why? What caused me to back away from something I feel so strongly about?

I've been asking myself that very question. And I think I hit upon the answer My efforts last year didn't amount to a hill of beans in the bigger picture. In the process of giving my time and energy, I encountered many negative people who diverted my attention from the reason I'm working so hard at this. And in that, momentum was lost. I wonder how many others have walked that same path - I know I'm not alone.

And so this year, I'm readjusting my focus. My pledge for the next year is to find new and innovative ways to contribute. To surround myself with positive and hopeful heart warriors like myself and to ensure that my efforts are more guided and focused, really targeting and impacting the need for awareness, which in turn will lead to greater advocacy in the health and government systems and stronger research funding. I think I'm on the right path, and feel good about that.

As with last year, I'll be posting an entry every day, CHD related, during CHD Awareness Week. This year will be a bit different from last - no long lists, no big plans. Just open talk and interesting articles about life with CHD. And to kick off the week, I'd like to share a video that's been circulating lately...

Blog Interview...

A week or so ago, I was offered a chance to participate in The Blogger Interview, and took the challenge laid down by Steve (the awesome co-blogger at The CHD Blog) on Adventures of a Funky Heart. Now it's my turn to paste here and offer someone else the chance to get in on the fun! This one is heavy on the CHD side... I'm gearing up for CHD Awareness week (Feb 7-14!). Your interview could be about anything...!

The rules: The interview(er) (me) gets to ask you five questions. You answer, I post it on my blog. You also post on your blog, FaceBook or wherever, and become the interviewee for another friend/colleague. Who wants an interview? I can do some creative questioning!! ;)

Were you a blogger before you created the CHD Blog?

Yes, I have a personal blog, Herding Cats, that I created immediately after my daughter was diagnosed with a CHD. The hospital I was at didn’t tell me about Caring Bridge or CarePages, so I winged it - I created a blog to keep family and friends informed. It was a great way to vent, to organize my thoughts and to share news without having to repeat myself. Since then, it’s grown into a sounding board and a way to stay in touch with friends and family outside my immediate area. I started and just can’t stop! It’s the cheapest form of therapy I’ve found to date.

The CHD Blog was born last year on a whim. I realized only a couple of weeks before February that there was a CHD awareness week. I wanted to do something. When my daughter was diagnosed, I felt alone in a vast sea… even the Internet couldn’t provide the answers I craved. The connections I wanted. Or a quick resource to get the information I needed. I thought that perhaps a portal could be created that was not affiliated with any organization, completely (or mostly) unbiased and for the general public’s consumption. That’s why the CHD Blog was born.

What have you learned from other Heart Moms and Dads?

I’ve learned how to advocate for my child. Coming into the world of acute care for the first time, I still held the ancient belief that the medical community knew much more than I did. While they do know more about specific diseases, organs, etc., they do not know my children. Only I can truly advocate for their needs.

I’ve also gained a support network I never knew I needed. I’m not much one for “support groups.” I don’t like group activities per se. Yet I have met incredible men and women both virtually and in person that have walked down similar paths. It’s hard to relate all of your feelings about “that” road we parents (or you patients) have been down. I didn’t even realize many of the emotions I harbored. Having friends that have walked similar paths in life really does make a difference.

What’s a routine day around your house like?

Honestly? Loosely organized chaos. I own a Montessori preschool, as well as an association management firm. I manage two full time clients (their accounting, marketing, public relations, event planning, administration, etc., etc.). I am married, have two daughters (six and two), two dogs, two guinea pigs and somewhere around 30 fish to care for. My day starts somewhere around 5:30 and ends somewhere around 1-ish. I spend some time in the preschool, a lot of time behind the computer or phone working with scientists and business professionals around the world, try to make sure to have some one-on-one time with my girls, and try to cram some volunteer work (usually CHD related) into the few remaining hours of my day.

Describe the moment that your doctor told you that your daughter had a heart defect?

It was a moment of pure, unadulterated shock. We knew something was wrong, but had thought it was minor at best. As the doctor drew a crude drawing of a heart on a napkin, his hand was shaking. He would not look me in the eye as he discussed her emergency intubation, that she needed to be medivaced out immediately, that surgery was her only option, and it was dire that intervention happened immediately. Until that moment, I had never even fathomed the possibility of a heart defect. I didn’t even know what CHD was.

In that moment, I asked stupid questions. One of the first, which I still cringe at, was if she would have open heart surgery, and if there would be a scar. Well, yes, dummy. What a stupidly naive question, so irrelevant to the life and death situation we were in. But I couldn’t connect the dots. I’d just had my daughter a few hours before, only 7 minutes after flying through the ER doors. And now they were telling me she was struggling for her life. I hadn’t had time to hold her. I hadn’t even really seen her. It was all just too much to take in.

After a long night of trying to wrap my mind around the situation and my reaction, I decided to change immediately how I was dealing with the trauma. I refused to let myself go down that “shocked” road again. My mode of operation since has been to push all emotions aside and to get analytical and realistic when faced with life-death situations. Of course, there are a lot of drawbacks to ignoring emotions and refusing to allow shock to take over - it only gives them opportunity to fester and grow, and it’s often ugly to deal with their neglected mutations after the emergency has passed. But it has helped me to become a better advocate in traumatic situations. Some people comment on this being a strength, but in fact it is not. It’s a total weakness - I admire other parents and patients that can cope with the emotional aspects of medical trauma while it is in progress.

What is your wish for your daughter?

That technology is always ahead of her in terms of treatment and her medical needs. That she lives a full and happy life. And that she never doubts for a second how much I love her. (Both of them!)

I'm thankful for Vivien Thomas

As I mumbled about this weekend, feeling a bit forlorn, a friend blogged a story about a man I knew nothing of, but whom I owe my child's life to. The story was so inspiring, I just have to share it here. Vivien Thomas is my newest hero.

Excerpted from Adventures of a Funky Heart...

Vivien Theodore Thomas was born on August 29, 1910 in Lake Providence, Louisiana. After graduating high school in 1929, he planned to attend Tennessee Agricultural and Industrial State Normal School, (Tennessee State University) with hopes of becoming a doctor.

He had been in school two months when the stock market crashed, causing him to lose his part-time carpentry job. Forced to drop out of college, Thomas still found work as a Lab Assistant at Vanderbilt University Medical School, working for surgeon Dr. Alfred Blalock. Although hired to sweep floors and clean out cages, Vivien Thomas impressed Dr. Blalock with his intelligence. Blalock was so impressed that he trained Thomas to be his Surgical Technician.

Thomas began assisting Blalock in the study of shock during surgery. Shock is caused by a sudden drop in blood flow through the body, and can be fatal. Working together, Blalock and Thomas developed ways to prevent shock from occurring during an operation. By World War II most of their theories were in use, saving the lives of countless injured soldiers.

In 1941, Dr. Blalock was hired by Johns Hopkins Hospital in Baltimore, Maryland, to serve as the hospital’s Chief Surgeon and as a Surgical Professor in the Hopkins Medical School. The doctor asked his trusted assistant to go with him, and Thomas agreed. But while Blalock was responsible for training every surgeon in the school, Thomas had to enter the building through the service entrance. He was also listed on the hospital payroll as a handyman.

The two men respected and trusted each other, but were hardly equal. At one time, Blalock was paid ten times more than Thomas. Often the doctor hired Thomas to serve drinks in his home during a social event. And never was Thomas allowed in the Operating Room.

It was at Johns Hopkins that the two men met Dr. Helen Taussig. Taussig had been hired in 1930 to oversee the Cardiac Clinic of the Harriet Lane Home, (Hopkins’ children’s hospital) and quickly grew interested in “Blue-Baby” diseases.

Usually, blood coming into the heart is routed first to the lungs, where it absorbs oxygen. The oxygen rich blood then goes back to the heart, where it is pumped throughout the body. Blue Babies are born with a badly formed heart or blood vessels that cannot provide enough oxygen to the blood. Their skin has a distinctive blueish tinge, especially in the fingertips. At that time Blue Baby diseases were incurable, and almost all of the patients died very young.

Dr. Taussig approached Dr. Blalock with an idea: if a Blue Baby’s heart couldn’t provide oxygen to the blood naturally , then why couldn’t a surgeon re-route the major blood vessels? Taussig’s plan was interesting but extremely dangerous. The operation would have to take place near the heart, and heart surgery was so risky it was almost never recommended. Any accidental damage to the heart would have to be repaired within 4 minutes, or the patient died.

Busy with his teaching duties, Blalock asked Vivien Thomas to work out the details of how such an operation could be done. Thomas began by studying medical textbooks, drawings and diagrams of hearts, and even real hearts taken from dead bodies. Then he operated on dogs, intentionally creating Blue Baby hearts in them. Later he would operate again, repairing the heart and making careful notes of everything he did. It was a slow process, learning exactly what had to be done. Many dogs died, and several of the surgical tools he needed didn’t even exist. Quite often, Thomas would invent them.

X-rays of the patient were another problem. X-ray films provide a good still photograph of the workings of the body. But Taussig preferred to use a fluoroscope. A fluoroscope image is best described as “X-ray TV”– It provided moving images of the interior of the body. If the patient accidentally moved, so did the picture. There was no way to record the fluoroscope image, so the three doctors would have to study their patient’s fluoroscope scans carefully and commit them to memory.

At last they felt they were ready, and Taussig began to search for a proper patient. On November 29, 1944, they operated on a little girl named Eileen. Although fifteen months old, Eileen only weighed nine pounds.

Thomas had planned to be in the observation room, watching the operation. Blalock said no – he felt more comfortable with Thomas close enough to give him advice. In preparation for the operation, Thomas had performed the procedure over 100 times on animals. Blalock had been taught the procedure by Thomas, but had actually done it only once. Breaking all the rules of the time, Thomas entered the operating room and guided Blalock through the operation.

Eileen’s heart never stopped beating and her blood vessels were only as thick as a matchstick. After about 90 minutes, Blalock was finished. Everyone held their breath as he removed the last clamp from a blood vessel. After a long pause, Helen Taussig said “Al, the baby’s lips are a glorious pink color.”

Proven to be a success, Blalock’s team performed nearly 300 operations in less than a year. Surgeons came from around the world to study Blalock’s new surgical procedures, only to learn that Thomas was the expert, not Blalock or Taussig. Still, the operation was known as the “Blalock-Taussig Shunt,” named for the surgeon who performed it and the doctor who suggested it.

Blalock retired in 1964 and died four months later. For six years, Thomas continued to teach but took on no major project – almost as if he were in mourning. But as the 1970’s began, more and more African-Americans were entering the Hopkins Medical School. To them, Vivien Thomas was not just one of their teachers, he became their mentor. And just as he had guided Blalock so many years before, Thomas’ advice and support guided a new generation of doctors through medical school.

Thomas died in 1985, just a few days before his autobiography was published.* Today, Vivien Thomas is almost unknown to the general public. But Dr. Alfred Blalock never forgot him. If someone stood too close to his right shoulder during an operation, Blalock would tell them to back away. “Only Vivien may stand there.”

* Thomas’ autobiography has been reissued with a new title: Partners of the Heart: Vivien Thomas and his work with Alfred Blalock.

And now, my friends, it's time to track down that autobiography. Thanks for sharing the story Steve!

The Operation Sadie Had

OK, two posts in one night, moments apart. But I just came across this on a fellow CHD mom's blog and had to post. This is the surgery Sadie had in order to survive. Hers was not as simple as the Arterial Switch Sadie underwent, as in addition to TGA she also had two holes in her heart (ASD and VSD) to repair, plus complications with lung issues before and after.

Warning: NOT for the faint of heart, the squeamish or those that freak out over surgery videos (That means you, Mom!). This is graphic.

CHD Awareness

Sick today. Please see post on learnaboutchd.blogspot.com.

Four days to go on this silly blog-a-thon idea I had. Ugh.

Why this is So Important

We all know that life is fragile, and that there are no guarantees about how long we, or our loved ones, get to be here. But the families of and survivors of CHD, are exponentially more aware of this, and of every seemingly “tiny” health matter.

Every germ is the enemy, every virus has the potential to wreck havoc on CHD patients’ broken hearts. We stock up on large bottles of Purel, are on constant alert at playdates for signs of sniffy noses and stay away from indoor public play areas. Because when our kids get sick, the child's heart does as well, and their hearts are often already struggling.

Today, I received news from Josie (who wrote yesterday's entry) that her daughter was admitted to the hospital last night with RSV. She's improving since her initial, scary admission, but there's still concern over the impact the virus could have upon her heart. It’s a scary situation and one that can only be helped by skilled medical practitioners, positive energy and prayers.

Unfortunately, Josie and her family are not the only ones struggling. Today I talked to my friend Karen, whose daughter has Hypoplastic Left Heart Syndrome (HLHS), meaning her daughter’s heart is missing most of the left ventricle. She told me that she dreads the question that most people ask her – “Is there a fix for your daughter’s heart?” Here’s what Karen says...

Unfortunately my daughter's heart will never be "fixed." She has half a heart. She has been "rewired" to live on one ventricle. We will live in constant fear that her heart will peeter out. We will live in constant fear that she will get an infection that her heart cannot handle. We realize that it is a good probability that she will need additional surgeries and /or a heart transplant in her future. So, no, she is not fixed. There is not a fix for Hypoplastic Left Heart Syndrome.

One can only imagine her heart break every time she has to answer this question for the well-meaning stranger who asks it. Or how much she hates that it.

What is the point of sharing these two stories with you? The point is, that because the public is not aware of CHD, it is also not aware of the pain our families face. Of the fears. Of the overwhelming desire for “normalcy” (whatever that may be) and the inability to gain it for our children. Of the yearning we have for a "fix" that has not yet been discovered.

Because the public does not know much about CHD, there is not enough of a demand to allocate the funds into the research. Through knowledge, we can find ways to raise interest, to raise awareness, to raise funds for research that will find earlier diagnoses, fixes and cures, medications and therapies. I… WE (the parents of children with CHD)… hope you will join us as we work to spread awareness to our peers, our legislators, our corporations, our friends.

The Miracle of the Heart

A fellow "heart" family in the Richmond area is also keeping a daily blog focusing on CHD awareness this month. One of their entries was especially interesting to me, so I asked if I could copy it here. Here's what Josie, who also has a daughter with TGA, wrote...

When you stop to think about the process of fetal development, really think about what is happening every day, it's absolutely breath-taking. The heart is one of the very first organs to form, in fact, it begins to beat often before the mother even knows that she's pregnant, within 21 days of conception. Congenital heart defects thus occur in the first days and weeks of existence; by the time the heart begins beating, most structural anomalies already exist. Depending on the particular defect, that may only be the beginning.

Although the structures of the heart exist from the earliest days, the heart itself continues normal development throughout the pregnancy. The flow of blood through the heart furthers growth and development of the various structures. When there is a structural anomaly, the blood may follow an unusual path through the heart and thus exacerbate the defect. Other defects result not from structural problems, like our daughter's, but rather from problems with the valves in between each section of the heart. Valves are critical to normal cardiac functioning because they prevent the backwards flow of blood as the heart contracts to pump blood to the body and the lungs. In order to function properly and efficiently, the flaps must be thin and pliable and should open completely and close completely. When they don't work, either because they are too small and restrict the flow of blood through the valves, or because they are weak and leaky, the development of the fetal heart may be seriously impacted. Problematic valves may prevent entire chambers of the heart from growing and developing.

But I digress. The point of this post was to explain that congenital heart abnormalities exist from the earliest days of the pregnancy. And no one knows why. No one knows what triggers the incorrect formation or when exactly development goes awry. Sometimes, although very rarely, there is a genetic component. The vast majority of congenital heart defects have an unknown cause and therefore we don't know how to prevent them. Seriously, when you stop to think about it, a normal heart is really quite amazing!

Feisty

One of the things I've heard since the moment Sadie was born is that she's feisty. And I've always agreed. The child came out of the womb screaming, and screamed until the moment she was intubated, even though it was difficult, given her condition. The first time I held her she cried as loudly as she could (which wasn't that loud, as she'd just had the breathing tube removed). During the first months of withdrawal from the medications she had, she screamed. In the middle of the night she often wakes and screams. At the grocery store, at birthday parties, in the library, in the car... (you may get where I'm going here)... she screams.

Tonight she threw one of her infamous fits as I took her out of the tub (from which she and her sister had emptied an entire bottle of baby wash and were trying to create bubbles by swishing around like crazy). As I was trying to keep her on my lap while she kicked and squirmed, I saw her scar, remembered I needed to write a blog tonight, and also, felt incredibly grateful for her screams. For a few minutes at least.

It's tough having a child like Sadie that has such a "challenging disposition." But at the same time, her screams are a reassurance to me. I often laugh to myself thinking of how desperate I was to hear her cries for the first time after surgery. Though it doesn't seem like it when I'm at wits end after a day of 10-12 tantrums, I am happy that her heart is strong enough to support her feisty spirit. Heaven knows that that poor little organ must work incredibly hard.

What the heck is CHD?!

I had an email conversation with a member of the Mended Little Hearts group this past week, and mentioned that I did not even know what "CHD" or a "Congenital Heart Defect" was until several months after she had been home from the hospital and her heart had been repaired. The other member replied that she had never heard it called "CHD" either, until the last couple of years. Interestingly enough, she is an adult survivor of CHD.

So why is it that we don't know what it is our kids have? We are given a medical diagnosis for missing chambers to underdeveloped (or missing) valves; from narrowed blood vessels to unconnected arteries. We identify ourselves as "a parent of a TGA child" or "an adult with tetralogy of Fallot" - not as part of the larger Congenital Heart Defect Community. Perhaps that is why we are so disconcerted in our efforts to join forces and create an effective awareness campaign.

When I was in the hospital with Sadie, I was desperate for information on her condition. I spent hours surfing the Internet for stories of adult survivors, for parents who could relate to the horrors of open heart surgery with their infant, and for inspiration. Never once did I Google "CHD" or "congenital heart defect" (both of which bring up tons of links I could have used!). I looked up "TGA," "Transposition of the Greater Arteries," "open heart surgery" and "pediatric cardiology."

I suggest we start to educate the social workers (who often have extensive interaction with the parents and provide links to support groups) on the importance of being able to identify CHD as being the tie that binds the "broken heart" community together. What do you think? How can we create a better way for newly diagnosed CHD families to find other heart families, websites, resources and information? Send your thoughts to learnaboutchd@gmail.com or feel free to post a comment.

Overwhelmed

Day 1 of my personal CHD adventure in advocacy, and I'm overwhelmed. In the last 48 hours I've received about 40+ emails from parents of CHD children and some of which have lost children to these series of defects. I had planned a nice commentary for my first blog of this month long venture, but can't seem to find it in myself to finish it today. So, I'll keep this simple and share with you some of the facts from the Children's Heart Foundation. I have not had time to verify all the facts they list, but from the research I've done in the last week, most seem to be right on target.

• CHDs are America’s number one birth defect, affecting nearly one out of every 100 births, or 40,000 babies a year.
• CHDs are responsible for one third of all birth defect related deaths, making CHD the number one cause of birth defect related deaths.
• More than 91,000 life years are lost each year in the United States because of CHDs.
• More than 50 percent of all children born with CHD will require a least one invasive surgery in their lifetime. Twenty percent of these children will not survive past their first year of life!
• The cost for surgery alone exceeds $2.2 billion a year!
• CHD research is grossly under funded. Pediatric cancer research is five times higher than CHD research although twice as many children die from CHD each year in the United States than from all forms of childhood cancer combined.
• Research has already made a difference in the lives of thousands of children and their families. In the last decade, death rates for CHDs have declined by almost 30 percent because of the advances made through research. As more children's heart abnormalities are treated, research is needed to meet the needs of CHD patients as they reach adulthood.
  

There, the facts are laid out. Next up... coping with a tantrum thrower, ways that CHD has changed my perspective on life and what you can do to make a difference for a child or family facing CHD.

Wow! What a response!

Thanks to everyone who has responded and is interested in spreading the word for CHD Awareness Week! Because I've had some media interaction and don't want to share my personal blog with the world (yes, yes, I know... why do I post in public then?), I've created a sister blog, LearnAboutCHD, to chronicle the events. I've also come up with a dandy little campaign called "7 for 7" that everyone is invited to participate in!

In addition to the mad blog marathon I'll be running this month, on the 7 days of CHD Awareness Week (Feb. 7-14), I and many other CHD families, friends and supporters will be posting lists of 7. While most of us will do seven things related to CHD, you're welcome to use your imagination and go wild with your 7 lists of 7. My only request in all of this? Please put a link in the entry to one of the many CHD Information/Support sites.

Feel free to use the logo I cooked up, or come up (above) with something a bit more exciting of your own. I'll be linking mine to the new sister site, or when posted there, to CHIN (www.tchin.org), as they seem to have the most information and links of the sites I have seen relating to Congenital Heart Defects. For those of you in Central Virginia, there is a great support group here called Mended Little Hearts that would benefit from informing Richmond area residents about their programs.

And we're off...!!

Going Grassroots for CHD

Last week I discovered that February 7-14 has been designated Congenital Heart Defect (CHD) Awareness week across the globe. Who knew? Obviously, this campaign doesn't have the impact factor other more "popular" campaigns have.

Sadie barely survived her CHD - partly because of the type of defect she had, but MOSTLY because her CHD was not caught in utero. For 17 months I've been angry - angry with my OB for never telling me CHD existed. Angry with the precious moments that were lost that I can never recover. Angry that her warning signs were ignored. I decided this past week that enough is enough with the anger - I'm going to take that energy and turn it into positive action. So, my dear reader, you get stuck bearing the brunt of my latest climb onto a soapbox.

For the 29 days of February, (it HAD to be leap year that I decided to take this on) I'm making it my goal to post to this blog every day, each with some sort of reference to CHD (though not always the subject). From the 7-14th, I'll post only lists of 7 relating to CHD. Let's see how creative I can get. There will be some juicy stuff in there. Just you wait.

You can join this grassroots crusade, too. Find some facts on the CHD Information Network and share them in an email or on your blog. Add an image promoting CHD Awareness (see the two here!) and a link to your MySpace page, LinkedIn page, FaceBook, blog or wherever you lurk in cyberspace. Better yet, join me in a blog-a-thon from Feb 7-14 for Awareness Week. C'mon over and jump onto the CHD Awareness bandwagon, it'll be fun times for all!

So Lucky

I've made quite a few friends through the various outlets I've found for parents of CHD kids, one of which posts frequent updates of her daughter, who suffers the same defect (and more) that Sadie has. While she is in a much more serious situation with her child than I am with Sadie, I felt that her post read a portion of my heart, a part that I'm unable to verbalize as eloquently (if at all). I'm posting a portion here:

I can’t describe what it’s like to be a part of this new world. Things that I never once thought about, are a part of my daily life now. As parents – no matter how old your children are – you never want to think about losing them. Unfortunately, when given the very special honor of raising a medically fragile child – those thoughts never go away. They are literally in my mind all the time – lurking in the background on a good day, and more obvious on the bad days. We have certainly had more close calls than I care to remember!

So many parents and children I have read about and couldn’t help but cry – even though I have never met them and never will. Even though I have not lost a child – my imagination of those feelings are very real. Especially when these parents have worked SO hard to do everything to keep their children alive and healthy. It just seems so unfair!

But one thing I’ve started to notice more and more – is that the ones that have been honored to raise these special children feel so lucky, so blessed. How can that be? We deserve to feel cheated and bitter and angry! Well, okay, we do feel those feelings. But, more than that, we feel blessed and grateful. I find that so amazing. Those that have never spent one night in the hospital with a child recovering from life-saving surgery should feel like that. Those that have never had to learn about a rare medical condition, surgery, birth defect, how to be a nurse for their child, etc. should feel like the luckiest people on earth.

I am incredibly thankful. (Even though I am very bummed that the Packers lost tonight.) Every single day completely amazes me. Now isn’t that something?

Reality Check

I have managed to convince myself these days that Sadie is a normal baby. After all, she's doing great, finally putting on weight, acting "normal"... I even find myself forgetting at times the hell we went through those first few months. Then I get a reality check.

Today was Sadie's cardiology appointment. Everything was perfect - her heart is functioning as expected, the valves are great, the pulmonary artery isn't stretched to far, the coronary arteries aren't kinked. She's 18 lbs 3 ozs and 27.75 inches now, so right on target. So why am I feeling so blue? He said almost good things today, though he did say that he was surprised that she was so alert - he had expected a bit of a zombie after all of the problems we had with drug addiction/withdrawal.

I guess it just all kind of hits when you go back to the cardiologists office. A whirlwind of memories comes flooding back. Until faced with the man who gave me the news that scary first night of Sadie's life, I can pretend it's a bad dream. Dr. Albrecht (her cardiologist) is wonderful - I think the world of him, and can never thank him enough for saving her life.

I guess my emotions really hit when our conversation about what to expect from this point out. He only wants to see her annually this year. Any time we want to sign her up for a new sport/activity, we should call, order a stress test and EKG and clear it first. Although they're lifting the recommendation for most "heart" kids to get antibiotics before surgical and dental procedures, he still wants her to do it, given her history. But the thing that got me was when we were chatting after the visit. He was telling me about his best friend's son, who had TGA as well. He was one of the first to undergo the "switch" operation Sadie had, and is 21 and active (a lacrosse player in college) today. Albrecht was telling me that, hopefully, Sadie will be able to be just as active, and "maybe even live long enough and be well enough to have children..." but that he couldn't tell me more than that. They don't know how long this surgery will "keep" or what is in store. For all we know, at 30 the stress on the pulmonary vein may be too much. Many kids have had complications, and the numbers just aren't in yet to know what odds are.

Not that I'm trying to be pessimistic - he was telling me this to try to encourage me. He also said that for all we know, she may live longer than any of us, and be more healthy. It should have been a comfort, but instead, it scared the heck out of me. I've been able to hold on this long by just thinking about today, the next year or two, etc. I haven't really thought about her future too much, or if there would be long-term complications. It just reminded me that although we've moved on, she's doing well and we're back to the "norm," she will never be truly "normal."

Six Months Today!

Happy 1/2 birthday, Sadie!

It's hard to believe that six months have passed since you blessed our lives with your presence. You bring so much joy into my life, and to everyone you meet. We are so lucky to have you with us, and we love you!