Leo Barbato - A Grateful Heart
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Many friends have offered to help us with a Go Fund Me page for our son Leo’s ongoing and lifelong medical care. But after much consideration, we have decided we were more comfortable doing it ourselves, because we want to share Leo’s story, and to spread awareness of Congenital Heart Disease (CHD) and in particular, rare and complex CHD.
As many of you know, Michael and I welcomed our beautiful son, Leo Barbato, into the world on January 16th, 2020. Leo was born with several serious, complex and extremely rare congenital heart defects including Straddling Tricuspid Valve, Hypoplastic Right Ventricle, Dextro-Transposition of the Great Arteries (D-TGA), Ventricular Septal Defect (VSD), and a severely leaky Tricuspid Valve. Out of all of these serious issues, his leaking Tricuspid Valve is proving to be the most challenging to manage. Leo unfortunately falls into the “rarest of the rare” category of CHDs. That is a club you never want to belong to.
Little Leo’s heart has captured ours in more ways than we could have imagined. ❤️ We have loved him since the day we discovered we were pregnant. He is a part of our family and has already changed all of us for the better. We don’t know what the future holds but hope there’s some happiness in the cards for us...for him. I think Leo chose us to be his family for a reason. I don’t know exactly why at this time, but I have faith that more will be revealed. Perhaps we were meant to be his advocates, and for countless other children like him. There is no cure for Leo’s heart defects, only repairs that come at great risk to his life.
We chose his name back in June, even before we discovered we were having another boy. We loved it and felt a strong connection to it. Little did we know how fitting his name would be. You see, Leo means “brave and courageous,” “little lion,” and “lion heart.”
To backtrack a little – Michael and I learned we were expecting our Leo on Mother’s Day, 2019. The news was exciting, but bittersweet, especially considering our recent, unexpected and heartbreaking pregnancy loss at 12 weeks. Just weeks before losing that pregnancy, I lost my beloved father, who had passed away from lung cancer, after transitioning into hospice care in our home. We were terrified of the possibility of bearing another loss, but were ecstatic we were given another opportunity to be parents again. We opened our hearts to our beautiful rainbow baby.
We first learned of Leo’s diagnosis when I was 20 weeks pregnant at our anatomy scan. Words cannot describe the devastation. I honestly wasn’t sure I was capable of handling any more sadness. It was the lowest point in my entire life. We were absolutely heartbroken.
Our entire world changed that day.
We were given three options: to terminate immediately (within a couple of weeks), to carry him full-term and put him in comfort care (hospice), or to pursue surgical treatments and go 100% in, and do everything within our power to save his life. We agonized with the idea that maybe he would suffer immensely and would never have the semblance of a normal life. Many were not optimistic about his outcomes. We were in the most unchartered territory of our lives. We prayed every day. We begged for answers and to be led in the right direction. We have never experienced more heartbreak and agony in our entire lives. The next couple of weeks after our diagnosis were unbearable. We were living in our greatest nightmare imaginable. It was a living hell. I took several weeks off from work to seek answers from every resource imaginable.
After weeks of hardly being able to get out of bed to care for my toddler, Michael and I decided to take the biggest leap of faith imaginable. We chose to have our baby – this baby we so desperately wanted – we chose to have him, and to find the best medical team in the world to help him.
We learned that our son’s conditions were outside of the surgical expertise in Northern Virginia and that to offer him the best opportunities for survival, we were referred to Children’s Hospital of Philadelphia and to Boston Children’s Hospital. After making multiple visits to both facilities, we were blessed to find the world-class team in Boston, who could offer Leo the best chances at life – and a good life, at that.
I relocated to Boston in the beginning of January to give birth to Leo and to have the experts at Boston immediately evaluate him. As soon as he was born, he was whisked away over to Children’s Hospital. Leo was beautiful and pink – he didn’t look like a sick child. However, less than 24 hours later, he crashed. Leo’s heart, lungs and circulation system were failing, and emergency open heart surgery was required.
The incredible team in Boston saved his life. I honestly believe that if we hadn’t been here, we would have lost him. They didn’t do much to repair his valve (the primary reason for his failing health), because newborn valve repair is just about the riskiest surgery imaginable, but they provided a very important and critical band-aid to his heart, in the hopes that he will be able to grow stronger for the next surgery, in 4-6 months.
We will be in Boston for the foreseeable future. We have been in the CICU for three and a half weeks now, and we may be here much longer. Unfortunately, Leo’s doctors believe he may require another open heart surgery before we leave this time around because he is not making the progress they had hoped for. Even with that, he will still require an additional open heart surgery at approximately 4-6 months of age, and beyond that at least two more planned open heart surgeries in his toddler days, early childhood, later childhood, teen and maybe adult years.
Many people have asked if Leo will be “cured” or “fixed” after this surgery. It breaks my heart to have to tell people that Leo will never be “cured” or “fixed.” His heart will require lifelong care and ongoing surgeries.
Currently we are fortunate to be staying in lower cost, family housing associated with the hospital, but if our stay continues, they may not have the space to accommodate us, and hotel costs are unaffordable. On top of all of Leo’s medical expenses, drugs he will need to come home with, flights to and from Boston for surgeries and follow up care, time off from work, the possibility that Leo may be ineligible for daycare for quite some time, our costs will quickly add up.
We are setting a monetary goal of $100,000. That may seem like an extraordinary amount of money, and it absolutely is. Surprisingly, it may not even begin to cover the out-of-pocket expenses over the next few months or years. Michael and I pledge, that whatever money we do not need or use caring for Leo, we will gladly and willingly donate to CHD charities, research efforts, Boston Children’s Hospital and related housing resources, toys and food for families in need. We have met countless families from all over the country…all over the world who are seeking cardiac care for their children. Just as we need help, they do too. We want to be able to give them some comfort during their times of need.
It is sobering to realize that research and funding efforts for helping children like Leo are grossly underfunded – we want to help with that, to ensure that families do not have to lose their livelihood to care for their precious children, who were born with chronic, life threatening conditions.
Before our diagnosis, I never realized the impact of CHDs. Below are a few statistics I have learned and are gripping every time I read them:
* CHDs are the most common birth defects - CHDs occur in almost 1% of births.
* Nearly 40,000 infants in the U.S. are born each year with CHDs.
CHDs are the most common cause of infant death due to birth defects.
* Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
* Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms of CHDs are less likely to reach adulthood.
* CHDs are approximately 60 times more prevalent than all forms of childhood cancers combined and funding for pediatric cancer research is five times higher than funding for CHD.
* Surgery is not a cure for CHDs. Many individuals with CHDs require multiple operations to survive.
* People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
* In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.
* A significant number of adults with CHD in the U.S. report having problems obtaining insurance and coverage for specialized care.
* Compared to the general population, adults with CHD have 3 – 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays.
* Fewer than 10% of adults with CHDs in the U.S. who need care from specialty adult CHD centers are receiving this recommended care.
We know that he will have to undergo multiple open heart surgeries. The timing of those is dependent on his health, condition of his heart, and other factors. There are so many unknowns....
Please keep our little Leo and all of us in your prayers. We need them, as do so many other families and babies with CHDs. They are the strongest warriors we’ve ever seen. ❤️
Thank you to everyone....we are eternally grateful for your love. ❤️❤️❤️
As many of you know, Michael and I welcomed our beautiful son, Leo Barbato, into the world on January 16th, 2020. Leo was born with several serious, complex and extremely rare congenital heart defects including Straddling Tricuspid Valve, Hypoplastic Right Ventricle, Dextro-Transposition of the Great Arteries (D-TGA), Ventricular Septal Defect (VSD), and a severely leaky Tricuspid Valve. Out of all of these serious issues, his leaking Tricuspid Valve is proving to be the most challenging to manage. Leo unfortunately falls into the “rarest of the rare” category of CHDs. That is a club you never want to belong to.
Little Leo’s heart has captured ours in more ways than we could have imagined. ❤️ We have loved him since the day we discovered we were pregnant. He is a part of our family and has already changed all of us for the better. We don’t know what the future holds but hope there’s some happiness in the cards for us...for him. I think Leo chose us to be his family for a reason. I don’t know exactly why at this time, but I have faith that more will be revealed. Perhaps we were meant to be his advocates, and for countless other children like him. There is no cure for Leo’s heart defects, only repairs that come at great risk to his life.
We chose his name back in June, even before we discovered we were having another boy. We loved it and felt a strong connection to it. Little did we know how fitting his name would be. You see, Leo means “brave and courageous,” “little lion,” and “lion heart.”
To backtrack a little – Michael and I learned we were expecting our Leo on Mother’s Day, 2019. The news was exciting, but bittersweet, especially considering our recent, unexpected and heartbreaking pregnancy loss at 12 weeks. Just weeks before losing that pregnancy, I lost my beloved father, who had passed away from lung cancer, after transitioning into hospice care in our home. We were terrified of the possibility of bearing another loss, but were ecstatic we were given another opportunity to be parents again. We opened our hearts to our beautiful rainbow baby.
We first learned of Leo’s diagnosis when I was 20 weeks pregnant at our anatomy scan. Words cannot describe the devastation. I honestly wasn’t sure I was capable of handling any more sadness. It was the lowest point in my entire life. We were absolutely heartbroken.
Our entire world changed that day.
We were given three options: to terminate immediately (within a couple of weeks), to carry him full-term and put him in comfort care (hospice), or to pursue surgical treatments and go 100% in, and do everything within our power to save his life. We agonized with the idea that maybe he would suffer immensely and would never have the semblance of a normal life. Many were not optimistic about his outcomes. We were in the most unchartered territory of our lives. We prayed every day. We begged for answers and to be led in the right direction. We have never experienced more heartbreak and agony in our entire lives. The next couple of weeks after our diagnosis were unbearable. We were living in our greatest nightmare imaginable. It was a living hell. I took several weeks off from work to seek answers from every resource imaginable.
After weeks of hardly being able to get out of bed to care for my toddler, Michael and I decided to take the biggest leap of faith imaginable. We chose to have our baby – this baby we so desperately wanted – we chose to have him, and to find the best medical team in the world to help him.
We learned that our son’s conditions were outside of the surgical expertise in Northern Virginia and that to offer him the best opportunities for survival, we were referred to Children’s Hospital of Philadelphia and to Boston Children’s Hospital. After making multiple visits to both facilities, we were blessed to find the world-class team in Boston, who could offer Leo the best chances at life – and a good life, at that.
I relocated to Boston in the beginning of January to give birth to Leo and to have the experts at Boston immediately evaluate him. As soon as he was born, he was whisked away over to Children’s Hospital. Leo was beautiful and pink – he didn’t look like a sick child. However, less than 24 hours later, he crashed. Leo’s heart, lungs and circulation system were failing, and emergency open heart surgery was required.
The incredible team in Boston saved his life. I honestly believe that if we hadn’t been here, we would have lost him. They didn’t do much to repair his valve (the primary reason for his failing health), because newborn valve repair is just about the riskiest surgery imaginable, but they provided a very important and critical band-aid to his heart, in the hopes that he will be able to grow stronger for the next surgery, in 4-6 months.
We will be in Boston for the foreseeable future. We have been in the CICU for three and a half weeks now, and we may be here much longer. Unfortunately, Leo’s doctors believe he may require another open heart surgery before we leave this time around because he is not making the progress they had hoped for. Even with that, he will still require an additional open heart surgery at approximately 4-6 months of age, and beyond that at least two more planned open heart surgeries in his toddler days, early childhood, later childhood, teen and maybe adult years.
Many people have asked if Leo will be “cured” or “fixed” after this surgery. It breaks my heart to have to tell people that Leo will never be “cured” or “fixed.” His heart will require lifelong care and ongoing surgeries.
Currently we are fortunate to be staying in lower cost, family housing associated with the hospital, but if our stay continues, they may not have the space to accommodate us, and hotel costs are unaffordable. On top of all of Leo’s medical expenses, drugs he will need to come home with, flights to and from Boston for surgeries and follow up care, time off from work, the possibility that Leo may be ineligible for daycare for quite some time, our costs will quickly add up.
We are setting a monetary goal of $100,000. That may seem like an extraordinary amount of money, and it absolutely is. Surprisingly, it may not even begin to cover the out-of-pocket expenses over the next few months or years. Michael and I pledge, that whatever money we do not need or use caring for Leo, we will gladly and willingly donate to CHD charities, research efforts, Boston Children’s Hospital and related housing resources, toys and food for families in need. We have met countless families from all over the country…all over the world who are seeking cardiac care for their children. Just as we need help, they do too. We want to be able to give them some comfort during their times of need.
It is sobering to realize that research and funding efforts for helping children like Leo are grossly underfunded – we want to help with that, to ensure that families do not have to lose their livelihood to care for their precious children, who were born with chronic, life threatening conditions.
Before our diagnosis, I never realized the impact of CHDs. Below are a few statistics I have learned and are gripping every time I read them:
* CHDs are the most common birth defects - CHDs occur in almost 1% of births.
* Nearly 40,000 infants in the U.S. are born each year with CHDs.
CHDs are the most common cause of infant death due to birth defects.
* Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
* Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms of CHDs are less likely to reach adulthood.
* CHDs are approximately 60 times more prevalent than all forms of childhood cancers combined and funding for pediatric cancer research is five times higher than funding for CHD.
* Surgery is not a cure for CHDs. Many individuals with CHDs require multiple operations to survive.
* People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
* In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.
* A significant number of adults with CHD in the U.S. report having problems obtaining insurance and coverage for specialized care.
* Compared to the general population, adults with CHD have 3 – 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays.
* Fewer than 10% of adults with CHDs in the U.S. who need care from specialty adult CHD centers are receiving this recommended care.
We know that he will have to undergo multiple open heart surgeries. The timing of those is dependent on his health, condition of his heart, and other factors. There are so many unknowns....
Please keep our little Leo and all of us in your prayers. We need them, as do so many other families and babies with CHDs. They are the strongest warriors we’ve ever seen. ❤️
Thank you to everyone....we are eternally grateful for your love. ❤️❤️❤️
Organizer
Bridget Barbato
Organizer
Annandale, VA
