Arrow Austin: Heart Transplant Support
Donation protected
I started this page to rally support for my sister, Ellen and her amazing son, Arrow (15 months old), who is waiting for a heart transplant. Ellen has left her home and job to move into the hospital, hours away, to be the strongest support for Arrow. Please join me in supporting her enormous dedication to her son and his continued health journey. Your thoughts, prayers, love and support are greatly appreciated!
Here is their story:
Arrow Austin was born with a congenital heart defect. At birth he had a loud, whooshing murmur that we soon discovered was the result of a large VSD (Ventricular Septal Defect). When Arrow was 8 months old he underwent open heart surgery to close his VSD.
The procedure itself went as planned, however when his surgeon was trying to take him off bypass his heart was not being able to take over and support him. After several failed attempts, they opted to put him on ECMO support and allow his heart and lungs to rest for a day. The following day Arrow was able to come off ECMO successfully and had a normal recovery! His doctors had some concern as to why his heart was struggling but since he bounced right back and recovered so well they did not explore anything further at that time. The expectation was that his heart was fixed and that we would see his function improve over the next 6-12 months.
We went home! Arrow grew and developed and even learned to crawl! We had about 6 months of pure bliss, including celebrating Arrow’s first Christmas and First Birthday!!!
When Arrow was 15 months old, he had a routine cardiology visit. At this visit they noticed his heart function had decreased. His cardiology team had noted in the past that he has a small left coronary artery but his heart had been functioning okay with that and they had never been able to get really good pictures of exactly what his left coronary looked like. With his decreased function they decided to do diagnostic heart catheterization so they could actually get inside his heart and get a really good look at everything going on.
Arrow's heart catheterization did not go at all as we had expected. The procedure revealed that Arrow's heart function was even worse. Once they saw his left coronary artery they realized it was even smaller than they had thought and there is nothing they can do to fix it. His heart function is so poor that he will need a heart transplant. He was admitted to the PICU immediately.
Once we were reunited in the PICU, I got to hold him for about an hour. He was clearly not feeling well and he seemed to be getting worse during that time. The decision was made to intubate him in order to allow his heart and lungs to rest. They quickly prepared for that, however once he was intubated they lost his pulse and had to begin ECPR while they prepared to put him on ECMO support.
Thankfully his heart surgeon, a critical care doctor, and all the support nurses he needed were already in the room when his heart arrested. Very high quality compressions were given for about 30-45 minutes while they prepared to put him on ECMO support. His surgeon said it was the worst possible situation but happened in the best possible scenario because everyone who was able to take care of him was right there. He was fully supported on ECMO following his cardiac event and he remained on ECMO for one week while we went through the evaluation process for heart transplant.
The scary part of this is that Arrow needs a new heart. The exciting part of this is that Arrow is a great candidate for a new heart! While Arrow waits for a new heart he has had a Berlin Heart implanted (also known as an LVAD, Left Ventricle Assist Device). Arrow was able to come off ECMO support once this device was in place. With his Berlin, Arrow should be able to wean off his sedation and live as normal of a life as being in the PICU will allow! I am hopeful that soon Arrow will be back to many of his normal activities (crawling, eating, playing piano, exploring his toys) and he might even take his first steps while supported by his Berlin Heart!
Arrow is a strong and resilient little guy. He has a calm and sweet demeanor and loves snuggling. He has always done things in his own time and I know he will continue to do so. He has a long and difficult road ahead, but I am confident that the Berlin Heart and eventually a transplant will allow him to live a full and beautiful life.
Arrow will stay in the PICU until after he receives his new heart and is well enough to go home. During this time (anywhere from a few months to a year) I will be with Arrow in the hospital and I will have limited opportunity to earn income. Any support during this time is so greatly appreciated.
Here is their story:
Arrow Austin was born with a congenital heart defect. At birth he had a loud, whooshing murmur that we soon discovered was the result of a large VSD (Ventricular Septal Defect). When Arrow was 8 months old he underwent open heart surgery to close his VSD.
The procedure itself went as planned, however when his surgeon was trying to take him off bypass his heart was not being able to take over and support him. After several failed attempts, they opted to put him on ECMO support and allow his heart and lungs to rest for a day. The following day Arrow was able to come off ECMO successfully and had a normal recovery! His doctors had some concern as to why his heart was struggling but since he bounced right back and recovered so well they did not explore anything further at that time. The expectation was that his heart was fixed and that we would see his function improve over the next 6-12 months.
We went home! Arrow grew and developed and even learned to crawl! We had about 6 months of pure bliss, including celebrating Arrow’s first Christmas and First Birthday!!!
When Arrow was 15 months old, he had a routine cardiology visit. At this visit they noticed his heart function had decreased. His cardiology team had noted in the past that he has a small left coronary artery but his heart had been functioning okay with that and they had never been able to get really good pictures of exactly what his left coronary looked like. With his decreased function they decided to do diagnostic heart catheterization so they could actually get inside his heart and get a really good look at everything going on.
Arrow's heart catheterization did not go at all as we had expected. The procedure revealed that Arrow's heart function was even worse. Once they saw his left coronary artery they realized it was even smaller than they had thought and there is nothing they can do to fix it. His heart function is so poor that he will need a heart transplant. He was admitted to the PICU immediately.
Once we were reunited in the PICU, I got to hold him for about an hour. He was clearly not feeling well and he seemed to be getting worse during that time. The decision was made to intubate him in order to allow his heart and lungs to rest. They quickly prepared for that, however once he was intubated they lost his pulse and had to begin ECPR while they prepared to put him on ECMO support.
Thankfully his heart surgeon, a critical care doctor, and all the support nurses he needed were already in the room when his heart arrested. Very high quality compressions were given for about 30-45 minutes while they prepared to put him on ECMO support. His surgeon said it was the worst possible situation but happened in the best possible scenario because everyone who was able to take care of him was right there. He was fully supported on ECMO following his cardiac event and he remained on ECMO for one week while we went through the evaluation process for heart transplant.
The scary part of this is that Arrow needs a new heart. The exciting part of this is that Arrow is a great candidate for a new heart! While Arrow waits for a new heart he has had a Berlin Heart implanted (also known as an LVAD, Left Ventricle Assist Device). Arrow was able to come off ECMO support once this device was in place. With his Berlin, Arrow should be able to wean off his sedation and live as normal of a life as being in the PICU will allow! I am hopeful that soon Arrow will be back to many of his normal activities (crawling, eating, playing piano, exploring his toys) and he might even take his first steps while supported by his Berlin Heart!
Arrow is a strong and resilient little guy. He has a calm and sweet demeanor and loves snuggling. He has always done things in his own time and I know he will continue to do so. He has a long and difficult road ahead, but I am confident that the Berlin Heart and eventually a transplant will allow him to live a full and beautiful life.
Arrow will stay in the PICU until after he receives his new heart and is well enough to go home. During this time (anywhere from a few months to a year) I will be with Arrow in the hospital and I will have limited opportunity to earn income. Any support during this time is so greatly appreciated.
Organizer
Camille Nolan
Organizer
Charlotte, NC
