Tootie's Heart

We are the Lee family, and we would like to introduce you to our four year old daughter, Emery, or "Tootie", as we fondly call her! 

Tootie is 1 in 110. She was born with a congenital heart defect called Aortic Valve Stenosis with a biscuspid valve. This is one of the most commonly diagnosed congenital heart defects and it is also the most serious valve disease in heart disease patients.

Some of you may have heard horror stories before, of children- usually playing sports, suddenly dying while on the field for no apparent reason. 

This is Aortic Valve Stenosis.  

What happens is, the opening of the aortic valve narrows gradually. Blood flow from the left ventricle to the aorta is restricted and in Tootie's case, additional pressure is put on the left atrium, which opens doors for further complication. The aorta continues to narrow, until there is not enough room for efficent blood flow, leading to sudden cardiac arrest. 

A healthy aortic valve has three leaflets that open and close to allow blood flow from the rest of the heart to the aorta. Tootie has only two leaflets, causing blood to leak in and out of her aorta. 

There is no cure for her disease, and in time, it becomes more severe. 

The good news is, surgical intervention can prolong her life, ideally granting her a long and otherwise healthy life! The surgeries she will brave include balloon valvuloplasty and aortic valve replacement. At this time, her cardiologist estimates a handful of valvuloplasty procedures throughout her childhood and adolescent years, in hopes that they will buy her time before her first aortic valve replacement. If a replacement is necessary before Tootie's body has fully matured, multiple valve replacements will be needed, as her heart will grow, but the replacement will not. 

A valvuloplasty is a surgical procedure used to expand the aortic valve. It is done as a temporary solution before open heart surgery, to allow for better blood flow. A balloon is attatched to the end of a very long catheter, which is inserted into a vein near the groin, and fed up into the aorta. Next, the balloon is inflated, stretching the aorta out. 

When the valvuloplasty no longer helps Tootie's heart, or when the disease has progressed until it is essential to take further action, she will undergo open heart surgery to have the valve replaced.  

Our Tootie is quickly approaching her first valvuloplasty, as she began showing physical symptoms of her disease this year. Intervention is necessary at this point in her journey. It is coming much sooner than previously expected. Her cardiologist didn't expect any operations until Tootie was between seven and ten years old, unless, that was, if she began exhibiting physical symptoms. 

She suffers from chest pain, dizziness, rapid heartbeat and extreme exhaustion, due to insufficiant blood flow from her aorta.  She sleeps for the majority of the time, our sweet Tootie is beyond exhausted, often times she is too tired to eat. When she runs and plays, she needs to rest after only a short while. She struggles to catch her breath, and yet she is so vibrant, and so full of life! 

If Tootie were to skip a valvuloplasty now, statistics tell us she would have no more than two years to live. 

Tooties medical expenses are not small, and we travel to see her cardiologist. With her heart disease worsening, these expenses are going to be increasing. While she does have some medical coverage, we will have to find alternative resources to help cover the surgical procedures, travel expenses and other necessities direclty related to her medical situation.  With her condition worsening, we are at a loss as to how we will be able to make everything work financially.

Because this will be a lifelong journey for Tootie, it will also be a lifelong financial burden for our family.  We have been saving a little here, and a little there, as we are able, setting the money aside for the inevitable ongoing circumstances Tootie is facing. 

The average cost for one valvuloplasty with the minimum hospital stay, free of complications, added surgical fees, or miscellanious fees that are commonly added to the bill, is $50,000.  Tootie will be recieving multiple valvuloplasty interventions until her replacement is absolutely inescapable. 

The average cost for one aortic valve replacement operation varies greatly. A variety of things factor into the cost, such as the particular procedure that is best suited for Tootie, if the replacement valve is mechanical or not, what hospital is going to be the best fit for her and so forth. The cost ranges from $80,000-$200,000 or more. The overall average is $164,238 excluding surgeon fees, complications, etc. 

It would come as a great relief for our family, to have some of this financial worry put to rest, if only for a little while. We now know that the valvuloplasty is coming sooner than previously estimated.

We have estimated an out of pocket cost around $10,000. If we reach our goal of $10,000, and our out of pocket expenses end up being less, the difference will be put away for future expenses directly related to Tootie's heart. 

We wish to make every moment with our Tootie, and our entire family count! Family is the most important thing, we must not take it for granted! 

Many thanks from the Lee family!
-James, Jaimee, Lane, Avin, Emmet and Emery!