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

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

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

Moms Will Cure CHD

Today, I've been inspired and revitalized on the whole CHD front. My day was full of outstanding presentations at the Consumer Trends Forum here in Boston. I've learned a ton, and will have more take-homes than I think I've ever had from a conference. But this is CHD month, and I'm on this mission to promote awareness, and thus one thing is stuck out in my head.

These past few weeks I've been mulling over the whole CHD awareness thing. Why don't people know about it? Why is it a "silent" epedemic? Why can't we get more research dollars?

You know why? Our children do not have a vote. Most CHD survivors don't realize they are part of an overall picture. And MOMS are not strong enough advocates. Sure, we tell our close friends and family, maybe even a congress member, but we aren't using our greatest strengths to change the face of this daunting task.

Don't get me wrong. As parents of children with CHDs, there is nothing more we want than to find treatments, answers, cures. There is nothing more we want than to save another mother from the pain we have seen ourselves and watched our children endure. But we are discounting ourselves.

One of the speakers at today's meeting was Maria Bailey, founder of a mom-based marketing group called BSM Media. A lot of things she talked about struck a chord with me (e.g. finding out I'm a mompreneur, how moms will decide who the next president is and how much major brands want to woo us). I left with the new reality that more moms are coming who are connected, who share my values, and who work in a similar manner that I do, yet share my family-first values. We, the mompreneurs, soccer moms and SAHMS, have more power than I ever imagined.

Why does this relate to CHD? Because I think we're underselling ourselves as moms. I myself have said, "I'm just a mom" when referring to my role in CHD awareness. I've made a weak attempt at awareness. And I discount my desire for change (I want it, but can't achieve it on my own).

Here's the reality check. I'm part of a $2.1 TRILLION dollar buying power who can influence my favorite brands. My vote will change our future. My voice does matter, because it's not a voice of one, but of thousands. We have POWER, and it's time to tap into it.

Tonight I learned that we have more influence than I ever imagined. Now it's our responsibility to tap into that power to bring attention to the matters we care about most - the health, well-being and future of children and adults with CHD. It's time to erase the "silent" part of the epidemic we face and find answers. I'm fired up and ready for action. Now for the next step...

- How do we come together to accomplish changes in legislation?
- How do we join forces and change the pitiful funding for the research that will change our children's lives?
- And how do we use our buying power and leverage to influence major companies to join our fight for our children and future generations?

Happy Heart Day!

Hooray!!! Today is the last day for lists of 7!! Please check out my friend Christy's post on the LearnAboutCHD blog - it was awesome of her to take the time to write it!

I hope everyone had a super Heart Day. I've never been one for the holiday myself, but it took on new meaning this year as I set out on the marathon CHD awareness campaign. So, for my final personal list of 7, I'd like to share what I've learned this past week as I've embarked on this adventure:

1. I'm surrounded by love. Up to my ears in it. And it feels GREAT! I have received so many phone calls, emails, shout outs and woop-woops from friends and fellow CHD parents. Everyone should do this once a year just for the warm fuzzies you get from realizing that other people care!
2. I'm lucky to have a kid with CHD. Don't get me wrong. I hate that Sadie had it, and would not wish it on anyone. But because she did, my eyes have been opened to a need I had no clue existed.
   
3. Any schmo can make a difference. I managed 400 unique hits yesterday on the LearnAboutCHD blog - something I started on a whim because I couldn't really find anything that brought the information together in one place without begging for money. Who'd have thunk it would take off like that. If I can do this little bit, then imagine what a devoted organization or company could do.
   
4. I have awesome family and friends. You know who you are. Jumped right in and started campaigning beside me, whether posting something on your MySpace page or blogging along side, thank you!!
5. Lists of 7 are NOT the way to go next year. Too much work. But I did like the shiny logo. Sparkly.
6. Sharing Sadie's story is OK to do. Honestly, I was a bit ashamed, embarrassed, and emotional about the whole Sadie heart experience. I shouldn't have been. I couldn't do a thing to prevent it. I just didn't want people to see us as "different." I didn't want them to treat her differently. So I simply didn't talk about it much, except with my closest friends and family.But I feel so much better now that I know there are hundreds of other moms out there, just like me, who feel the same way at some point and time.
   
7. Sadie is a rock star. At first I was worried about drawing attention to her. But she loves to check out her newspaper mug we stuck up on the fridge last week, and has proven she's a total diva in progress.

7 For 7: FAQ From the AHA

7 Frequently Asked Questions
Taken from a fact sheet provided by
American Heart Association
www.americanheart.org/children
with my personal comments and reactions

The American Heart Association (AHA) has a love/hate relationship going on with the CHD community. They do provide some research funding for CHD (they're actually the #2 funder in the US according to one of my sources). However, their main focus lies on adult heart health, with campaigns for women's heart health, stroke awareness and childhood obesity taking center stage on their advocacy front. They neglect to even address our children unless we kick and scream to be heard.

Some of the CHD community have given up on them entirely. I have not, because the research they do on a valve in an adult may be applied to a pediatric patient someday. They have the potential and the funds to reach many more people than any of the plethora of CHD support/advocacy groups out there. The next highest contributions to research are from the Children's Heart Foundation, which raised 2.3 million in 2-3 years. In case you're not involved in the research community at all, it's a mere spit in the bucket.

So, I think we have to find ways to work with them. They do have some information worth sharing. They simply need to be educated, just like our obstetricians who keep missing all the warning signs, our technicians who pass over patients in one or two ultrasounds but never really see the heart, and our friends, family and loved ones. That being said, I do have some comments to their "FACT" sheet they posted online. So, I thought I'd share them with you and complete my second-to-last 7 For 7 post for the year (hooray).

1. What is a congenital heart defect?
   Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
   
   Sadie had one of the more severe defects. The majority of children who have heart defects have narrowing of the arteries or small holes in the heart, which are easily corrected, outgrown or not overly dangerous. It is believed that most defects occur between 6-10 weeks of gestation. This does nothing, however, to assuage a mom's guilt. I'll forever feel like I did something wrong that made Sadie's heart form unnaturally. Was it the fertilizer I used? Was I failing to get the supplementation she needed (folic acid and iron are both suspect in heart defects)? Is there something wrong with me that I passed to her? They're all silly, but all things that I think most mom's think, so that's why I share these über private thoughts.
   
   
2. Who is at risk to have a child with a congenital heart defect?
   Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
   
   The number is actually (according to the CDC website and based on average births in 2005) 1 in 103 are born with birth defects in the US. It's believed that that rate could actually be higher on an international scale.
   
   One interesting conversation I had in the last week or so was with two other heart moms, during a play date. Somehow the conversation came up that we had all had miscarriages. Does this play into it? We began to wonder how many other CHD moms had also lost children before going full term. I haven't found any research out there that provides any answers.
   
   
3. How many people in the United States have a congenital heart defect?
   Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
   
   Ah, the AHA. Wrong numbers again. The CDC says 40,000 are born. It's been interesting these last few weeks as I've come across adult survivors of CHD in my adventures in advocacy. It turns out that adults often end up relying on pediatric cardiologists, because there simply is NOT enough research out there to support care for CHD patients as they mature. It's a whole other CHD battle that I'd never even considered... what sort of care will be provided for Sadie when she grows up?
   
4. Why do congenital heart defects occur?
   Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
   
   No, I didn't drink while pregnant (well, a half glass of wine twice in the 9th month, weeks apart, if that counts); No, I didn't smokem da peace pipe. Didn't sniff glue. Didn't snort or intake anything. I ate healthier than I normally do (I think all moms do), took all my prenates, followed the doctors orders. But Sadie still came out with her heart plumbed backwards. I may never know why. I hate some of the looks I get sometimes when I talk about her defects. I can see some people judging. Maybe some of the analysis of those looks are in my head, but I don't think it all is. I've even had a few brazen individuals ask what caused it. I DON'T KNOW.
   
   
5. How can I tell if my baby or child has a congenital heart defect?
   Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
   
   They seem to miss the story I've heard time and again this week on one of the listserv's I'm on... diagnosis at birth. Many people have "warning signs" during ultrasounds and prenatal visits. Unfortunately, I am not the only mom who was unpleasantly surprised at birth.
   
   One friend I made since Sadie's birth had a daughter with HRHS, or only half of a heart. She was not diagnosed until birth. Her daughter passed away last year, and it was incredibly sad. Part of my sadness stems from the fact that, to this day, I know in my heart that her life could have been saved by that pre-birth diagnosis. This is part of the reason I'm out on the renegade CHD blog-a-thon this month.
   
   
6. How serious is the problem?
   Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
   
   This is the part that annoys me with the AHA. They admit it's the #1 cause of death due to defects in infants (1 in 43 children are born with defects of some sort). They admit that it's a killer. They admit that the cost of care is astronomical. But they ignore our children. Hopefully they will hear the CHD parents and adults of this world and change their minds... our children, our friends and our loved ones deserve the attention and advocacy we so desperately need.
   
   
7. Are things improving?
   Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.
   
   Sadie is one of those statistics. Her heart surgery was first put into use 25 years ago. Her heart is "fixed" most likely. I can not wait until the day that I read of fixes for HLHS, TA, and all the other life-threatening CHDs out there. It's just around the corner if we can get enough funding and awareness going!
   

7 For 7: Strangers Who Saved Sadie's Life

Today's inspiration came from a phone call I received this afternoon from LifeNet Health, the donor service that provided the tissue that was grafted into Sadie's heart. They wanted to use a thank-you note I'd written in their newsletter - a note that had taken me over a year to gain the courage and strength to write. With that in mind, I wondered, not for the first time, how many strangers have made Sadie's life possible. So, for today's post...

7 Strangers Who Saved Sadie's Life

1. The Unknown Organ Donor. Someone's life was lost, and because of him or her, Sadie's life was saved. A piece of his or her heart is now beating as part of Sadie's heart. It's almost too much to think about.

2. The Ambulance Driver. He was supposed to get off hours before he took Sadie on her life transport from the hospital she was born in to UVA, where she had a atrial septotomy to save her life that night. Before he left, I had to sign papers for him. As I signed them, I asked him to get her there safely. He squeezed my hand, and with tears in his eyes said he would. And he did.

3. The PICU Nurse. Actually, there was a whole parade of nurses that saved Sadie time and again. From the first nurse I met, who had been up all night with her, trying to get her vitals on an even keel, to the last one I said goodbye to, who hugged Sadie and wished us luck. They don't get enough credit for all they do.

4. The Unknown Blood Donors. Sadie had so many transfusions during her stay in the hospital that I lost track of them. I know there were a minimum of six. Because the blood bank requirements would not allow us to donate blood (we would need to have it screened prior to its use, and there was no time for it), we relied on the life that flows through other people.

5. The PICU Residents. Overworked, underpaid and sleep-deprived, they save lives every day in pursuit of their careers. I once watched 6 of them surround Sadie's incubator, trying to determine what cocktails they could concoct to save her life "this time" and was scared that there wasn't an attending present. I did not know a single person's name. I still don't. But they poured their hearts and minds into saving that little girl that night.

6. Dr. Albrecht, our cardiologist. No longer a stranger to us, he was called to our hospital when she would not "pink up." He diagnosed her, and sent her on her way to the life-saving procedure that she needed. It just so happened that his specialty is TGA. It just so happened that he was on call that night for Bon Secours (we didn't have a NICU at the hospital she was born in). Even he is astounded by the way that it turned out that he was the person there, and right in the nick of time. Every time he sees Sadie, and comments on how the stars were aligned that night so that she could be with us today.

7. Jatene and Mustard. In 1975, Dr. Jatene succeeded with the first arterial switch operation for the type of defect Sadie had (Transposition of the Greater Arteries). The Jatene procedure, or arterial switch, was pioneered by Canadian cardiac surgeon William Mustard and it was named for Brazilian cardiac surgeon Adib Jatene, who was the first to use it successfully. Twenty five years later, my daughter is "fixed" because of their research. This is why advocacy is so important - because awareness of heart defects will lead the public, government and corporations to fund research. And research can and does lead to finding ways to repair more hearts.

7 For 7: Why I'm Happy

I hit a brick wall with an overload of work, CHD stuff, kids, colds, etc. today. Luckily my friend Karen has been kind to step up to the plate and take on today's 7 For 7!

7 Reasons I am Happy to be a Mom to a Child with CHD.

No parent is happy to receive a diagnosis of CHD, but CHD is not a death sentence. For today's post, Karen Ward shares 7 reasons she is happy.

1. I don't sweat the small stuff any more (or as much)
2. I snuggle a little longer at night when I tuck my kids in
3. I have met some WONDERFUL people
4. I have a stronger faith and better relationship with God
5. I am more thankful for what I have and have found that I want less
   
6. I have found strength that I never knew I had
7. I appreciate life so much more

Thanks for sharing your 7, Karen!

7 For 7: 7 CHD Stories

Today's 7 For 7, features just a few of the stories that have been shared with me by my newfound CHD friends, through this blog, or online. You will not stand up from reading this post without your heart feeling lighter!

Cynthia's Story. I am a 60 year old survivor of Tetralogy of Fallot. I had the Blalock-Taussig Shunt when I was 3 and a total correction at 15 years. In 2004, I had to have my pulmonary valve replaced. In addition, an aneurysm had formed in the teflon that was used to expand the pulmonary artery during the total correction. This was also repaired in 2004.

Throughout my life, I've always worked to overcome shortness of breath, becoming tired, and all of the other symptoms that go along with this defect. I realize that I push myself further than anyone else pushes me.

I have discovered an organization, the Adult Congential Heart Association, that I would like to share with you. People like me who have lived longer than anyone expected them to live can present a problem to doctors. We're sort of leading the way for the children who are just being born with CHD. By the time some of these children reach my age, I hope that the things that are learned now in managing my health and the health of other adults will be standard procedure for the management of their health.

Parents, prayers are answered every day. As you all have indicated, your children are already a blessing and, in many ways, are blessed. I would not have lived if Dr. Blalock and Mr. Vivian Thomas had not worked diligently for years to develop the surgery that saved my life. Others are working equally as hard to find ways to save the lives of children born today and tomorrow. My thoughts and prayers are with all of you and all of the children as you move through life.

Christy H's Story. At 16 weeks pregnant we learned through an ultrasound that our daughter had lung issues. At 23 weeks, we were shocked and devastated to learn of her heart defects. Between the two, she was given a 5% chance of survival. Despite the odds, my daughter, Harlie, was born on September 25, 2006.

Harlie has a CHD called Congenitally Corrected TGA and three other heart defects that complicated matters and forced the surgeon to do a three operation “repair” to re-plumb her circulation. I have been told that her heart will last her about 30+ years and that after that we will be looking at a transplant.

In addition to her heart defects, Harlie also has Goldenhar Syndrome (an asymmetrical craniofacial syndrome). She has an underdeveloped jaw and missing bones, low forward set ears, with a dysmorphic left ear and no canal, many vertebral anomalies, left eye anomalies, misshapen skull, anoperineal fistula, and a lung malformation that required the removal of most of her right lung.

Harlie is now 16 months old and has just started to crawl. She has a 20-word vocabulary in sign language. She breathes through a tube in her throat, called a trach. She eats through a tube that was surgically placed in her stomach. She’s had seven surgeries and has spent over four months in hospitals and she’s just getting started.

Despite all of this, Harlie is amazing! She’s smart and happy and we think that she’s quite cute. She has such an agreeable personality and just seems to go with the flow, whether she’s at home or in the hospital. We are very thankful that we have her.

Harlie's heart, lung, airway and feeding issues are pretty overwhelming. But I try to focus on what’s good and be thankful for those things. I try very hard not to think too much about her heart or her lungs. I see children running and playing everyday and wonder if Harlie will be able to do that. I try very hard not to think about what it will be like when she realizes that she looks different. Or the first time she comes home crying because someone made fun of her. We are a very vain society, and that will make parenting her much more challenging.

But worrying about all that is a waste of energy – energy I need to just get through each day. I do my best. I take very good care of her. I make all the necessary appointments with her 14+ doctors, I got numerous opinions until I found the right doctors with the right plans for her. I give her all her medications as prescribed. I’ve learned CPR and she wears an oxygen and heart rate monitor when she sleeps. But, in the end, despite all my efforts, I cannot control how her heart functions. I just hope that it beats like it’s supposed to and that it doesn’t stop. I hope that she never gets a plug in her trach that blocks her ability to breathe. I hope that she never pulls the trach out (again! – yes that was a close call). I hope I never have to call 911 again. I hope that she will know that her care was never too much for me and that she is worth whatever I have to do to keep her safe and sound. I hope that I can continue to be the strong mother I need to be for her. And I hope that she will know that she has made me the happiest mom on the planet.

Sharon's Story. Saving the life of infants us everyday work for Dr. Karen S. Rhueban, a Pediatric Cardiologist at University of Virginia Hospital. She was interrupted from an interview to perform an emergency cardiac catheturization on a newborn 4 1/2 pound twin whose blue-tinged skin indicated her blood was not circulating properly to receive oxygen.

In the cardiac catheturization laboratory, Dr. Rheuban inserted a plastic tube in the baby's leg and laced it through blood vessels to the heart to record circulation of the blood and make an accurate cardiac diagnosis. The end of the tubing was blown into a nickel-sized balloon and passed through a hole in the upper chamber of the baby's heart to allow blood to circulate. Known as a balloon atrial septostomy, this procedure saved her life. The baby had to have open-heart surgery at 9 months old in order to survive.

Today, Sharon is 23, and a marine wife. She leads a normal life with a daughter of her own, who has a clean bill of health. Two adults have told me in the last week that they had never met any one else with CHD. Sharon is one of them!

Karen's Story. As I lay on the exam table and the ultra sound tech squeezes some warm gel on my expanding belly, I look over at my two daughters who are 4 and 7 and squeeze my husband’s hand. We are all eager to find out the sex of our newest addition to the family. With two girls already, we were eager to find out if Daddy will get a little boy. The baby is uncooperative. The tech is unable to tell the sex. Our excitement elevates. The tech steps out to get the doctor. Soon the doctor comes back. He looks at the screen for a long time. I start to get a sick feeling in my stomach. I squeeze my husband’s hand harder. The sweat is building between our tightly gripped hands. His panic is beginning to flow to me threw his hand as though our bodies were connected. The doctor speaks…. “This is not good. This is bad.” I truly feel like I am going to faint. I look over at my girls who have started to look at a Dr Seuss book and have forgotten about what we are there for. I think to myself that they understand “This is bad.” Get them out of here. I don’t want them to see me cry. Oh my God! Oh my God! The tech takes my daughters out of the room to the waiting room. The doctor tells us that the baby is missing part of its heart. Missing half it’s heart! What does this mean? Is the baby going to be able to live?

We were sitting in the doctor’s office and the cardiologist began explaining everything. Our baby has Hypoplastic Left Heart Syndrome. To this day, I don’t remember that doctor giving us much, if any, hope. But I don’t remember much from that conversation. The one thing I do remember was we were told to think about aborting the baby. After many tears and prayers we decided to continue with the pregnancy and do everything we could for our baby.

Jameson was born on October 13, 2006. When she was four (4) days old, she had her first open heart surgery. The next couple of months were extremely difficult. Jameson was stable but, by no means, was she a healthy new born. She struggled to eat and thrive. She had her second open-heart surgery at 4 1/2 months. The recovery was much quicker this time. The best part was she was crying, crying because she was hungry and wanted to eat! Her third, and hopefully final surgery will be in April.

Every month Jameson has grown stronger. She is one now and is such a wonderful baby. She sometimes gets winded when she is crawling or moving around but other than that, the scar that is hidden under her shirt is the only proof of what this little girl has been through.

Parents deserve to believe their child has a chance. Had we followed the doctor’s advice we would not have our beautiful “Little Champion.”

Misty's Story. My CHD story begins on New Year’s Day, 2005 when I found out I was pregnant with my 3^rd child. My pregnancy was pretty normal. All of my ultrasounds were fine and there was no cause for concern, so we thought. Sydney was born on August 24, 2005. Her APGAR scores were 9 and 9. Everything looked good until the pediatrician came in and checked her out and heard a murmur that was “slightly louder than what we like to hear” and called in a pediatric cardiologist, Dr. Albrecht.

At 4:30 pm that afternoon, Dr. Albrecht came into my room with a nurse. I was there by myself taking a nap and waiting for my newest little girl to be able to come to my room and get to hold her. I’ll never forget what he said. “Your daughter has a problem with one of the valves in her heart and I have called a transport team from UVA Medical Center to come and pick her up and transport her there. She will have surgery tomorrow morning.” Sydney has Aortic Stenosis (AS). Dr. Albrecht advised me that her Aortic Valve was a bi-cuspid, instead of a tri-cuspid, valve and was barely functioning and letting very little blood out of the valve to the Aorta. After he went over everything, he sent the nurse to bring Sydney to my room so I could say my “hello’s and goodbye’s”. My husband called his parents to go pick up our other 2 children and bring them to the hospital to meet their new little sister before they took her an hour away to prepare her for the surgery the following morning.

The next morning my husband called to let me know that they were getting ready to take her back and that she had so many tubes and wires coming out of her that the only place that you could touch her was on her head. At that point, he started to break down, again, and I began falling apart, again. Two hours into her procedure, we received the news that everything went well, she had had two blood transfusions, and she was going to be ok.

When I was finally released from the hospital and able to go see my daughter two days after her birth, I found her in her little bed with an intubation tube and many tubes and wires attached to her. Since that day was my birthday, Steve’s parents brought our two older children up to the hospital to see their sister. I didn’t want them to see her with all of the tubes and wires, but someone brought them back before I could say anything. What was amazing was that when she heard them start talking, her heart rate stabilized, her respiratory rate normalized and her blood pressure returned to a normal state. It was incredible.

Today my daughter looks like a normal 23 month old, but she is not a normal little girl. There are things that she will have to go through that ‘normal kids’ won’t have to do. Besides the future surgery(ies) to open and eventually replace her aortic valve, she won’t be able to do some sports that she may want to do and she will, most likely, have to take medicine every day of her life. Her heart will never be normal.

Joshua's Story. Joshua is an active 4 year old. He was born in June of 2003 with hypoplastic left heart syndrome, a rare and fatal defect, unless treated. Basically, he was missing his left ventricle and his aorta was very narrow. Parents of children with this defect are given three options: they can take their child home to die, they can try for a heart transplant in hopes that a heart will become available soon enough, or their child can undergo three surgeries that will reroute the blood so that the child can survive. Jodi and Mark, Joshua's parents, opted for the surgeries.

Joshua developed severe blood infections after his first surgery, but miraculously pulled through, and his parents were able to bring him home almost two months later. His second open-heart surgery took place when he was 5 ½ months old, and he went home five days afterwards. He had his third surgery, the Fontan, when he was three. This surgery was particularly hard on the family as they had had over two more years to learn to love Joshua, and they knew there was a possibility he might not come home. However, Joshua also made it through this surgery with a few post-surgery complications called pleural effusions. Though it kept him in the hospital longer than anticipated, Joshua did fully recover.

We do not know what is in Joshua's future. The doctors cannot "fix" his heart. We are hoping that Joshua will not need any other procedures for a long time. In the meantime, he has fun playing with his brothers and making his parents laugh. Every day with him is a blessing.


Christy D' s Story. My husband were excited when we found out I was pregnant with my second child. Then our world came crumbling down at our 21 week ultrasound; Steve and I were told our little baby girl had a severe and life threatening heart condition. Instead of joy, we were expecting, our hearts were filled with pain, fear and grief. The baby was diagnosed with Tricuspid Valve Atresia (TA)---meaning her tricuspid valve did not form. Without her tricuspid value, her blood was unable to flow into her right ventricle, enabling growth; meaning she has a 3-chambered heart.

Sydney was born on December 4th, 2006 and had surgery 8 days later. Without this surgery, which has its own risks, she would not survive. The recovery was a roller coaster ride. Sydney developed seizures 1-2 days post-op, which is a risk to having open heart surgery. Her O2 sats, heart rates, and blood pressures were all over the place. She had so many tubes and lines in her, that the nurses had run out of places to put them. After many prayers and medical assistance, we got to take Sydney home just 3 weeks later, just in time for Christmas. What a great gift!!!

At 4 months of age, Sydney had her 2nd surgery. Just remembering Sydney going through surgery last time, made us sick with grief. We knew she was in the best hands, but there are never any guarantees when it comes to surgery. Thanks to all the Angels above, the 2nd surgery was a breeze compared to the first surgery. After the surgery, Sydney's life has improved in a dramatic way. At approximately 2 ½ years of age, Sydney will have her 3rd surgery, as long as everything continues to progress as planned.

Sydney, despite her medical problems, amazes me. She is full of love and life. She always has a smile, no matter what is going on. I thank God for her every day, and despite the fact it is hard being a “heart parent”, there is NEVER a day, or a moment, I would change it, if it meant not having Sydney in our lives.

7 For 7: How CHD Changed My Life

Before I go into the 7 for 7 for today, please keep up prayers, positive energy, or whatever you can muster for baby Claire, who was sent to the hospital earlier this week with what they thought was RSV. It turns out that it's not RSV, it's much more serious, and she's having a very tough time right now. Please think of their family tonight!!

I can't believe I just posted this on the "public" blog, but I did. After talking to lots of moms all over the country in the last year, I've found out that I'm not alone. In fact, I found out that I'm not unique at all in these 7 things - they are the norm when it comes to coping with a life-threatening illness with your child.

1. Realizing What a Gift Life Is. The miracle of life is more poignant than ever before. As an emotionally-reserved kind of person, I'm amazed at the overwhelming emotions I have when it comes to babies. I cry in part out of joy, in part out of longing for those moments that were lost with my daughter, part in sadness over the babies I know that were lost, and mostly over the miracle that I see. Life, simply, has so much more meaning to me.
   
2. My "Uninsurable" One. I've unfortunately learned the hard way what the real status of health care in America is, and it infuriates, sickens and saddens me simultaneously. When Sadie was first born and crisis hit, we were left with several six-digit "balance" billings that took over 213 hours to get down to manageable sums. Sadie has now been deemed "uninsurable" by every health insurance provider in Virginia. We're hoping she can get medicaid since everyone has denied her, despite the fact that we make too much to qualify according to state laws (ironically, we'd be much better off insurance-wise if we were on welfare at the moment).
   
3. Learning to Let it Be. With Katie, I spent hours upon hours in instructive play, devouring educational theory and incorporating it into every day life. When Sadie came along and had a "defect," I was even more determined to do the same to keep her at or ahead of the milestone charts. Instead, Sadie has taught me to step back and enjoy her milestones as she reaches them at her own pace. Her unique personality and the obstacles she's overcome have made me stop and relax and enjoy those moments of play for the sake of play, snuggling without talking, and letting the house go to hell in a handbasket while we chase each other in circles.
4. Financial Challenges. I have avoided this post like the plague, but after talking to families of all "status" levels with CHD kids, I feel like I can now share this. Frankly, have felt ashamed at the toll the entire experience has taken upon our family's finances. Like I should have somehow been prepared, or been able to avoid the impact it's had. The co-insurance costs, counter billing, medication, doctor and specialist co-pays, loss of income from extra time off of work, extra child care... the list goes on and on. It's incredibly hard to put myself out there and admit that it's taken a huge toll on our finances. That being said we are lucky - we've taken a hit, but we're surviving. I've met other families have lost everything they own in their fight for their child's life. It's enough to make me run to Canada and wave the socialist flag.
   
5. Learning How Tough Marriage Can Be. I can't even begin to describe to you what it's been like for Jason and I this past year. Some of you know about it, some of you don't, but let's suffice it to say we've definitely had our ups and downs in our 12 years of marriage. But nothing can put a strain on a relationship like having a child in critical condition. You feel closer, yet more alienated from eachother. Your full attention goes to your child's survival (and, in our case, in worrying about the impact on Katie as well), and you lose a lot of yourself and almost all of your relationship in it. Having a partner beside you going through the same thing, but with differing ways of handling things (because none of us are truly alike in how we deal with stress and grief!) is both wonderful and incredibly hard.
   
6. Smiling at Tantrums. I used to roll my eyes at parents in stores that had tantruming children, thinking how my child would never behave that way thanks to my parenting prowess. Someone upstairs wanted to take me off my high-horse, and did so with my second child, who has CHD. As I've mentioned once or twice, Sadie has some insanely intense tantrums, which worry me (developmentally) but also reassure me. I'm thankful her heart is strong enough to support them. I'm thankful I get to hear her voice. Most of all, I am thankful for her life. Now I'm the one being glared at, and though I'm embarrassed and ready to run from the store, I can always find a smile at the know-it-all, because he or she has no idea that this screaming banshee in my grocery cart is the ultimate survivor.
7. A New Perspective. My friend Christy, mom to Sydney (see the 7 faces entry 2 days earlier), wrote, "Having a child with CHD had totally changed my prespective in life. I do not sweat the small stuff like I used to. I have learned to cherish the moments with my children. For the smiles...drools....tears....temper tantrums....arguments....laughs....for their strength....courage.... and most of all, for how much they teach me about life and unconditional love." Well said, Christy, and ditto to that!!

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!

Yes we can!

I am not a big fan of politics. In fact, it's fair to say I HATE politics. But while I may or may not share his political views or view the speeches of the candidates as rhetoric, the recent speech by Obama in New Hampshire moved me. Will.i.am of Black Eyed Peas fame turned that speech into the inspiring and moving video above. On the website he created to feature this video (dipdive.com) Will.i.am wrote:

When you are truly inspired..
magic happens...
incredible things happen...
love happens..
(and with that combination)

Inspiration breeds change...

What does this have to do with CHD Awareness? Well, to be honest, this dive into the CHD world has been a tough one for me. Though I jumped onto the idea of doing a 29-day blog-a-thon, I've found that it's hard for me to say what I really want to say. Some of it may offend. Some of it is too hard to write. Some of it is very personal. But it is a message that needs to get out to the public. At a mass level.

To me this video was a reminder... that through inspiration, change is acquired. I've been inspired by the other CHD moms who are tackling this issue by my side. And by the surgeons and cardiologists who are at this very moment finding new paths of treatment, new ways to save lives.

Take a look at this video created by a mom from the local Mended Little Hearts group . (Note Sadie's beautiful mug shots).

After gaining this inspiration, I can't help but feel a spark of hope, and an emblazoned desire to create change. Creating awareness is a HUGE challenge, but messages like these drive me to take action. Can we inspire others through our small movement? Can we cultivate this plight for awareness, and in doing so, save lives? YES WE CAN.

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.