Dear Heart Family;

1 in every 125 babies is born with a congenital heart defect. You are receiving this letter because your life has forever been altered, yet blessed by knowing and loving one of these 1’s. February is Heart Month, and in the past, my friend and fellow heart mom, Amy Brenny, helped CHD awareness by sending out a yearly letter. It is my honor to continue this tradition for her.

Maybe this past year was the year you were catapulted into the incredible world of heart defects and heart family. Whether the shocking news was delivered in a cold ultrasound room at 20 weeks pregnant or by an ER doctor rushing you to the flight helicopter, from that moment on your life was changed forever. Words such as sats, blood gasses, NEC, lasix, aldactone, captopril, once a foreign language, are now part of your every day speech. Possibly you are still spinning from the shock and fast pace of it all, just trying to make it through one day at a time without forgetting meds or tube feedings. You may feel exhausted, overwhelmed, scared. But one look at your 1 is all it takes. And you know you are blessed.

Maybe this past year was one where you spent the majority of it in the hospital. Where the place called "home" was just a far off dream, or a place you got to visit for brief periods of time between hospital stays. The routine of hospital life has become your new job, and the bench in the hospital room your new bed. You long for the day you can take your 1 home and all be together as a family. You may feel discouraged and defeated, but you cling to hope of a better future. Your 1 smiles or giggles while hooked up to IV polls and you think, "If you have the strength to do this- so will I." You are blessed with renewed strength and determination.

Maybe this was the year your 1 finished, prayerfully, the last of surgeries for a while. Like me, you may be experiencing an unusual, yet greatly appreciated calm. The blessings are so numerous and obvious, they are hard to ignore. And yet, as you settle into a normalcy you once thought wouldn’t be possible; you pray, in your complacency, without hospital stays yelling a reminder, you never forget how very blessed you are.

Or, maybe this was the year that you lost your loved one. Or the year that meant you were one year further away from the last time your arms and your heart were full. I can’t even touch the surface of what you may be feeling, but I pray that somehow, through the pain of loss, peeks a joy of having known and continuing to love your 1 for ever.

Where ever you are at on this journey... What ever this past year was to you...we are all heart family, related to one another through the common vein of knowing and loving someone with a CHD.

As one of my dear friends, whose son was one of the first to receive the fetal surgery at Boston, coined it: Our loved ones are "Trail blazers." Every surgery, procedure, success, and sadly, even passing, help pave the way for the future and increased success rates. The doctors and surgeons learn from each 1. Even within this last year, research and new surgeries have exploded to offer hope for the future. Some of the ones I am aware of are as follows:

· Surgical robotics and ultrasound guided intracardiac surgery. The department is pioneering the use of 3-D ultrasound and laparoscopic techniques to operate on the beating heart.

· Tissue engineering to stimulate the growth of new tissue to repair congenital defects, including valve abnormalities, right ventricular defects, and arrhythmias. (taken from www.childrenshospital.org)

Other advances include Boston experimenting with scraping the hypoplastic ventricle and performing a two ventricle surgery vs. the Fontan, which allows for a four chambered circulation. They have also been successful at placing the very first stent in a fetus and have seen a growth in preventing, or reducing the severity of HLHS by increased blood flow to the left ventricle while baby is still in the mother’s womb. New advances are being made towards heart/lung transplants- something rarely attempted just a few years ago. Septum wall defects (holes in the wall) can now be repaired in the cath lab vs. open heart, and there is talk of the Fontan possibly being a cath lab procedure in the future. Research has indicated mutations in a gene called "Notch1" may be one cause in Hypoplastic Left Hearts, where once it was thought there was no proof of genetic linking to this defect. And other research is aggressively studying the genetic structure of zebrafish because it is similar to that of humans and they can regenerate their hearts after injury.

There is a bigger picture of the heart world. One that when you are too close (those of us who love our 1), is difficult to bring into focus. But, for those who can step back, and distance themselves a bit, the picture becomes clear. It is a picture of HOPE. The faces of all the 1’s in 125, combine and blend to portray a beautiful image of a better tomorrow. One where Science and Faith continue to improve our world.

Our 1’s were born with broken hearts to teach us to trust God and appreciate life with our whole hearts. They make this world better.

Always- heart family love and prayers;

Amy Lou Frank,

carrying on for Amy Sue Brenny
loving and missing Severin