Congenital Heart Defects Awareness Week Begins - Giving Thanks for those who Give Hope

Today kicks off a national campaign to raise awareness of congenital heart defects!  Bean's problem was Dilated Cardiomyopathy - the cause is idiopathic AKA "we don't have a clue".  Right now, as she is "creeping" across the living room floor towards me (she isn't quite crawling yet...she has a really big head), I think about how lucky we were to have someone as knowledgeable as the doctor who admitted her at Sutter Memorial in Sacramento.  So, my focus this week is going to be on the doctors, nurses, surgeons, specialists, etc. who make survival of these little ones so much more probable than in the past.  Some of them will be ones that Bean worked with directly, others will be those I hear about on the parents' listservs I am active on and still others will be those we would probably never hear about because they are doing research quietly in a lab somewhere.  Hopefully, this will serve as an introduction to some of the people who can help families who feel helpless and give hope to those who feel hopeless.

After spending five days in our local hospital with what we thought was complications caused by RSV, Bean was transferred to Sutter Memorial's PICU because she was going to need to be on a ventilator to help her little lungs clear.  We received a call as we were driving down from the admitting doctor, Daniel Falco.  He told us he was going to have to intubate her (as we had already been told), but wanted to know if anyone had spoken to us about her heart.  No one had.  He told us it was five times its normal size and that Bean was a "sick little girl".  My heart sank.  When we arrived, he had intubated her and wanted to talk.  He took us to a waiting room with bright murals and comfy chairs and there he told us that the intubation was complete but had been "a little harried" with Bean reacting negatively to the Ketamine he used to sedate her and she had almost stopped breathing.  He was very honest and forthcoming and I think both Jason and I felt MORE confident in him because he was honest with us than less confident because something had gone wrong.  He told us about her heart and that he was referring her to a cardiologist on staff who would be by to speak with us and he had ordered an EKG and an echocardiogram.  At the time, I had heard these words, but had no idea what they were and no experience with these types of tests in the past.  Dr. Falco sounded totally competent, he was confident in what he was saying and he had a way of sounding comforting despite the fact that he was telling us things that were totally disconcerting.  He had a plan, he sounded determined and we felt confident that things were going to get done that needed to get done.  This is, I think, a major factor in making the difference between a good doctor and a great doctor - if they can communicate effectively, make you feel totally confident in what they are doing AND get what needs to be done done, then they are great.  If they get what needs to be done done, but makes you feel like you are in the dark or not sure of what or why things are happening then they are good doctors, but not great.

Dr. Falco was Bean's doctor for only a week.  I believe he was a big reason she was transferred to Lucille Packard Children's Hospital so quickly.  He had done both his residency and his fellowship there.  In  addition to his being a doctor at Sutter Memorial, he is also on the board of the Child Abuse Prevention Center.  He has a pediatrics practice in Sacramento in addition to serving in the Critical Care area of the PICU at Sutter Memorial.  He is an excellent doctor and I think was the first step in making Bean a survivor of a CHD.  After writing this blog post, I realize that I want to let Dr. Falco know how I feel, so he will be receiving one of our Valentine's Day cards with Bean's picture on it and a note explaining my gratitude and appreciation.  I only hope/wish that everyone can have a doctor like Dr. Falco if they have to go through discovering a child of theirs has CHD.  Thanks Dr. Falco!

Great Series of Blog Posts for the Month of February

Over at CHD-UK there will be a great series of blog posts celebrating stories of individuals who have experienced congenital heart defects.  The first story is truly inspirational - a man who came back from near-death and heart surgery to complete an Iron Man Triathlon!  Check the story of David Watkins out over at CHD-UK.

And just think - if David Watkins can complete an ironman triathlon, can't you complete 30 minutes of exercise today?  Do it - for your heart!

Happy Heart Month!

Just wanted to take a moment to wish every reader out there happy heart month! I will be dedicating daily posts this month to healthy hearts! Bean had a big, big heart, but it just didn't work right. She was lucky enough to receive the gift of a second heart that does work right! In honor of her donor and the donor's family, we will be sure to take very good care of this heart! At this age, that is pretty easy...but as she grows up, it will get more difficult. Both my hubby and I could do a little work on our own heart health! So, this will be a month of education on how to keep hearts healthy, how to improve the health of hearts that may not be as healthy and finally, how much of a miracle it is to celebrate Bean's first birthday thanks to someone else's generous heart.

My resolution for this month was already to exercise at least once a day, so that fits right into the heart healthy focus for this month! But, I hope to find and offer any readers a lot of valuable information about keeping their heart healthy in the long-term!

So, Happy Heart Month! Take care of yours and be generous in giving love from it!

My Year in Wordle

Is this really encouraging?

So, I read this in an article from the Tampabay.com and I'm wondering how good I should feel about it.

One example: heart transplant surgery, performed at All Children's around 15 times this year. As with other advances in children's care, the long-term consequences of early cardiac intervention are still unfolding.

For example, hypoplastic left heart syndrome, a birth defect that once resulted in death, for a number of years has been addressed with multiple surgeries. These youngsters now are reaching adulthood, and as their reconstructed hearts grow, they often require ongoing specialized care. So it's not uncommon for these adults to go back to a children's hospital, where the cardiac specialists are most familiar with their condition.

"There's nobody alive today that had open-heart surgery for congenital heart disease 80 years ago," said Dr. Michael Epstein, a pediatric cardiologist and senior vice president for medical affairs at All Children's.

"If somebody has a baby today with a heart defect and they ask the question: 'Will my baby lead a full life?" he added, "the answer is, we don't know."

Which is far more encouraging than the dire reply parents got decades ago.

I mean, obviously, I'm glad that Bean came along now and not 80 years ago, but the "we don't know" part of that answer isn't exactly a resounding vote of confidence.  But, as one of our cardiologists told us, medical understanding and technology and medication is advancing quickly and by the time Bean becomes an adult, she may not have to have biopsies to figure out if she is in rejection.  She may not have to have a transplant to fix a failing heart.  She may not have to take medications to keep her body from rejecting her heart.  But, we just don't know at this point.  We will always have trepidation about Bean's health in the long-term, but at this point, I am hopeful.  I am encouraged.  I have met families online and at the RMH and at clinic whose children had transplants years ago, and they are living healthy, happy lives.  


So, even though the article doesn't portray the promise that modern medicine offers to families like ours with much enthusiasm, I am encouraged.  There are obviously points of despair, when we hear of another child (or adult) lost to a heart condition.  But, there are also many points of exuberance, when we hear of another child who is able to be saved through medication or surgery.  I am also encouraged by the amazing people I have met because of Bean's condition and I am inspired by their strength and dedication.  I hope that I can be a source of strength and inspiration to others.  I realize that we will never be able to rid ourselves of heart defects, but I hope that through raising awareness and increasing funding for research and treatment, we can increase the points of exuberance and greatly decrease the points of despair.