Heart Surgery for Congenital Heart Defect

Hi,

My name is Ryan Webster. My family and I are trying to raise money to help with expenses while we are going through this very hard time. We do not know how much funds we will need, but I went with this amount because anything will help!

My daughter was born with three congenital heart defects that were detected before she was born. She spent a week in the NICU after she was born. Two of the defects healed on their own. She has a Multi-fenestrated Atrial Septal Defect (ASD), which is referred to as Swiss cheese heart. It is a condition that causes holes in the heart and causes the blood to flow improperly. This defect has not healed.

Genevieve, my daughter, is now 8 and started to have serious issues. She started having severe chest pain, extreme fatigue, and becoming short of breath after small amounts of exercise. We took her back to Shands and they did an Echo and told us that the ASD was not the cause. However, we did not accept that because she continued to have these problems and they were very scary for us, our daughter, and the school notices these issues quickly. They called us and she had another episode at recess and the pain was not going away this time. We took her immediately to the ER at Advent health and they told us these issues could definitely be related to the heart defect. They referred us to their pediatric cardiologist.

The cardiologist ran another Echo and found another defect that was missed on the previous Echos that Shands did and looked back at the Echos that they did. The doctor said he was shocked they missed this problem because it was on the Echos that he reviewed. The insurance has already denied us for this saying that it was not medically necessary. The Dr's office is fighting to get this rectified. This is right off the bat and we anticipate more issues. As anyone with medical problems knows, insurance doesn't want to cover anything if they can get away with it. This is going to be a very difficult journey for our family filled with extra expenses and loss of work.

The DR. told us our daughter has what is called Anomalous origin of the right coronary artery. In addition he said the ASD was actually large, 8mm, and needed to be fixed also because it will not heal on it's own. The pain she has been having is the same pain that someone feels when they are having a heart attack. What is happening is when she does activity the artery is closing almost all the way. If it closes completely that is a heart attack. So this condition could literally cause her to have a heart attack. She has had to stop all activity as a result because it is life threatening. She had to have a CT Angiogram for insurance to confirm the problem, which it did.

She is now being referred to a surgeon to start the process involved with proceeding with surgery.

I have been plagued with a lot of health issues for a long time and have been unable to work for the last 7 years. I have severe arthritis throughout my body and many other issues. I am not going to go into the multitude of problems that I have because this is not really about me.

My wife works in child welfare as an adoptions case manager helping to find homes for children and is our only source of income. We are on a very tight budget and barely get by now. She will have to miss a significant amount of work during this process and we will have a lot more expenses related to this. We will have to travel from Summerfield to Orlando for this problem. We have no choice in the matter and we do not know how we are going to do this financially.

We are not the type of people to ask for charity. We have struggled throughout our 14 year marriage. We always make it through by the skin of our teeth. Asking for help is a very hard thing to do. We are doing this now because our children mean everything to us and we will do anything for them. Even the smallest amount of help through this will make a big difference for our family. We hate having to do this, but everyone needs a little help at times. We will pay it forward when the opportunity arises.

We ask that you give only what you can and don't feel obligated to help. Even a kind word through this very hard time will help us more than you know. We also know that everyone is struggling at this time with inflation. Everyone is having a hard time just getting by and we don't want anyone to put themselves in a harder spot to help our family.

Also, for some reason I put in our zip code and it is saying that we live in Dallas, FL. I am not sure why and cannot figure out how to fix this, but wanted to clarify that for everyone.

We love you all and thank you for your time and consideration for us!

Thank you,

The Webster Family