Elizabeth’s 3rd Open Heart Surgery
Donation protected
My daughter, Elizabeth, is 6 years old and we have just found out she has to go for her third open heart surgery on August 19th, 2019 which is 4 weeks away. With little to no time to prepare for this, we are asking for help. I do not like to ask for help from others, but in this case we need it.
Liz was diagnosed with a Complete AV Canal Defect when she was only a week old. This means she was born with basically only 3/4 of her heart, she was missing a heart valve.
When she was only 6 months old, she had her first open heart surgery to create the valve out of the other valve she already had. When she was 2 1/2 years old, she had her second surgery to correct the flow from the chamber to the valve, which was backing up and causing fluid to flood her lungs.
Now here we are 4 years later thinking we were done and Liz wouldn’t need any more surgeries.
About 9 months ago, her cardiologist said something wasn’t right and discovered she has a growth in her heart which is causing a lot of pressure. They assured us it was very slow growing and that something probably wouldn’t have to be done for a year or so.
About 3 months ago, we went back to her cardiologist for a routine follow up and that’s when they noticed the unthinkable, her chamber to valve flow has started causing fluid to back up into her lungs again.
For those who aren’t familiar with this condition, this makes it much harder for her to breathe, causing shortness of breath and extreme coughingto the point it causes her to throws up from time to time. Liz gets very tired when playing with her friends or doing anything physically active, which really limits her getting to play and to just be a kid.
We originally thought she would be able to go a while before another surgery was needed, they thought it wasn’t that severe, and her cardiologist predicted surgery in the summer of 2020.
Unfortunately, we had a follow up appointment 2 weeks ago, and that’s when we were told her condition has deteriorated rapidly, her pressure has gone up significantly not only with the clogging growth but with the chamber to valve flow, meaning with each day it’s getting harder and harder for Liz to breathe normally and live a normal life.
The cardiology team decided that day she needs to have surgery ASAP.
We were making plans for her to have surgery in the summer of 2020 but finding out she must have surgery with only 3 weeks notice, we have had no time to save money or prepare for this in any way.
I will likely have to take close to a month off work for her surgery & recovery.
It’s hard to tell how long we will be at Boston Children’s Hospital for given the severity and complexity of her surgery. Her first surgery we were there for almost two weeks, her second surgery we were there for over three weeks.
We are hoping that this isn’t the case this time but only time will tell, Liz needs to stay until she’s well enough to go home.
I don’t like asking for help but we can’t do this alone so I am asking, if anyone is able to help us defray some of the expenses of staying in downtown Boston for possibly two weeks in the summer (and peak tourist season), we would greatly appreciate the help. We are trying to make this as stress free & easy as it can be so we can spend our time & energy on Liz’s recovery.
A lot of you will probably have suggestions for things like David’s House or similar which we greatly appreciate any and all suggestions, unfortunately places like David’s House book up months in advance and with the incredibly short notice, we haven’t been able to secure any place to stay. This puts the financial burden for a long short notice stay in Boston, including accommodations, food, laundry, and gas firmly on us. We have 3 weeks from today to get ourselves and Liz ready.
Liz never knew what was happening with her previous surgeries because she was too young but she understands what’s happening this time and is understandably extremely scared & sad.
Thank you so much for taking the time to read this and we are so thankful for any help you’re able to give us. I ask if you cannot help us by donating, please keep my brave beautiful girl in your thoughts & prayers.
Thank you so much for the love & support,
Elizabeth and Olivia ❤️
Liz was diagnosed with a Complete AV Canal Defect when she was only a week old. This means she was born with basically only 3/4 of her heart, she was missing a heart valve.
When she was only 6 months old, she had her first open heart surgery to create the valve out of the other valve she already had. When she was 2 1/2 years old, she had her second surgery to correct the flow from the chamber to the valve, which was backing up and causing fluid to flood her lungs.
Now here we are 4 years later thinking we were done and Liz wouldn’t need any more surgeries.
About 9 months ago, her cardiologist said something wasn’t right and discovered she has a growth in her heart which is causing a lot of pressure. They assured us it was very slow growing and that something probably wouldn’t have to be done for a year or so.
About 3 months ago, we went back to her cardiologist for a routine follow up and that’s when they noticed the unthinkable, her chamber to valve flow has started causing fluid to back up into her lungs again.
For those who aren’t familiar with this condition, this makes it much harder for her to breathe, causing shortness of breath and extreme coughingto the point it causes her to throws up from time to time. Liz gets very tired when playing with her friends or doing anything physically active, which really limits her getting to play and to just be a kid.
We originally thought she would be able to go a while before another surgery was needed, they thought it wasn’t that severe, and her cardiologist predicted surgery in the summer of 2020.
Unfortunately, we had a follow up appointment 2 weeks ago, and that’s when we were told her condition has deteriorated rapidly, her pressure has gone up significantly not only with the clogging growth but with the chamber to valve flow, meaning with each day it’s getting harder and harder for Liz to breathe normally and live a normal life.
The cardiology team decided that day she needs to have surgery ASAP.
We were making plans for her to have surgery in the summer of 2020 but finding out she must have surgery with only 3 weeks notice, we have had no time to save money or prepare for this in any way.
I will likely have to take close to a month off work for her surgery & recovery.
It’s hard to tell how long we will be at Boston Children’s Hospital for given the severity and complexity of her surgery. Her first surgery we were there for almost two weeks, her second surgery we were there for over three weeks.
We are hoping that this isn’t the case this time but only time will tell, Liz needs to stay until she’s well enough to go home.
I don’t like asking for help but we can’t do this alone so I am asking, if anyone is able to help us defray some of the expenses of staying in downtown Boston for possibly two weeks in the summer (and peak tourist season), we would greatly appreciate the help. We are trying to make this as stress free & easy as it can be so we can spend our time & energy on Liz’s recovery.
A lot of you will probably have suggestions for things like David’s House or similar which we greatly appreciate any and all suggestions, unfortunately places like David’s House book up months in advance and with the incredibly short notice, we haven’t been able to secure any place to stay. This puts the financial burden for a long short notice stay in Boston, including accommodations, food, laundry, and gas firmly on us. We have 3 weeks from today to get ourselves and Liz ready.
Liz never knew what was happening with her previous surgeries because she was too young but she understands what’s happening this time and is understandably extremely scared & sad.
Thank you so much for taking the time to read this and we are so thankful for any help you’re able to give us. I ask if you cannot help us by donating, please keep my brave beautiful girl in your thoughts & prayers.
Thank you so much for the love & support,
Elizabeth and Olivia ❤️
Organizer
Olivia Rae Gould
Organizer
Chester, VT
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