Miracle for Macsen
Spende geschützt
Macsen was born with several congenital heart defects (CHD) at the Children's Hospital of Philadelphia (CHOP). There is a blog chronicling their journey hosted by blogspot at this link: Macsen the Grayt His left ventricle (LV) is squished pancake flat. The mitral valve (LA to LV) is almost a solid wall and the Aortic Valve (LV to Aorta) is non-existent. He has a single ventricle heart.
There is a full diagram at the CHOP website with a comparison of a normal heart and he HLHS heart, and explanations of the 3 open-heart surgeries (OHS) required with a diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Macsen has had these 3 surgeries, but unfortunately, he is now in heart failure and in need of another intervention. His options now include a heart transplant (which is not really a solution, due to the risks and additional complications that come with a transplant) or another OHS to place a pacemaker - something called CRT (cardiac resynchronization therapy.) His CHOP team doesn't do CRT in single ventricle children and they think we need to list him for transplant - CHOP feels his heart is just done. But we reached out for a second opinion with Boston Children's Hospital (BCH), and his CHOP cardiologist is doing more research - reaching out to her contacts at other centers that use CRT.
Bottom line - Macsen's heart is beating out of synch - which is called disynchrony. Instead of starting the beat at the top and squeezing down the heart to have an efficient pump, his is beating erratically. Boston scheduled a heart cath - Macsen's 2nd this year- and after extensive consultation the BCH doctors feel the electrophysiology study went well and they will perform the CRT via OHS - Macsen's 4th on July 25th. He is too small to have the CRT placed via cath or small incision.
The thing about the CRT is that there is very little published research on it and even the Boston team keeps urging us not to "get hopes up." They say "sometimes it's a homerun" and sometimes it doesn't help at all. If it was all for nothing that would be devastating after putting him through the trauma of another surgery - he's older now. He will remember this. But if there's a chance the CRT will support his own heart and allow it to function better, then perhaps it will keep him off the transplant list a while longer and worth the risk.
All of the above has required extensive time away from home, and as Macsen's dad is the sole earner for the family, the costs are mounting. They paid almost $1500.00 out of pocket to stay in Boston for 10 days. His Cath had to be postponed because he had an episode on the day of the original Cath, he was hypoglycemic - sugars out of whack, unresponsive and it was super scary. The Cath was completed on Monday the 9th, and the CRT was supposed to be on the 10th, but, on the 9th another heart patient was blessed with a donor heart and the doctor was in heart transplant surgery until 3am on the 10th. All of the surgeon's cases were cancelled for the 10th. The hospital asked them to stay on stand-by with daily checkins until Friday the 13th! They stayed in Boston for 10 days total - and just the lodging was over $1500.00.
While they wait for the pre-op appointment scheduled for 9am on the 24th, they are staying with family in Maryland. Macsen's dad flew back to Alabama to get at least a full week of work in before his surgery. They should expect a 2-week recovery once the CRT has been completed, and that means losing 2 additional weeks of income, while still paying all of their "normal" bills at home in Alabama, and trying to swing the cost of lodging in Boston for a minimum of 14 days.
This is an appeal for help. Any little bit will help them. If you cannot give money - please send prayers, specifically, for the doctors to proceed with no medical errors, for the CRT to work, and for the little man to heal quickly with no complications.
Thank you in advance for your consideration and assistance.
There is a full diagram at the CHOP website with a comparison of a normal heart and he HLHS heart, and explanations of the 3 open-heart surgeries (OHS) required with a diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Macsen has had these 3 surgeries, but unfortunately, he is now in heart failure and in need of another intervention. His options now include a heart transplant (which is not really a solution, due to the risks and additional complications that come with a transplant) or another OHS to place a pacemaker - something called CRT (cardiac resynchronization therapy.) His CHOP team doesn't do CRT in single ventricle children and they think we need to list him for transplant - CHOP feels his heart is just done. But we reached out for a second opinion with Boston Children's Hospital (BCH), and his CHOP cardiologist is doing more research - reaching out to her contacts at other centers that use CRT.
Bottom line - Macsen's heart is beating out of synch - which is called disynchrony. Instead of starting the beat at the top and squeezing down the heart to have an efficient pump, his is beating erratically. Boston scheduled a heart cath - Macsen's 2nd this year- and after extensive consultation the BCH doctors feel the electrophysiology study went well and they will perform the CRT via OHS - Macsen's 4th on July 25th. He is too small to have the CRT placed via cath or small incision.
The thing about the CRT is that there is very little published research on it and even the Boston team keeps urging us not to "get hopes up." They say "sometimes it's a homerun" and sometimes it doesn't help at all. If it was all for nothing that would be devastating after putting him through the trauma of another surgery - he's older now. He will remember this. But if there's a chance the CRT will support his own heart and allow it to function better, then perhaps it will keep him off the transplant list a while longer and worth the risk.
All of the above has required extensive time away from home, and as Macsen's dad is the sole earner for the family, the costs are mounting. They paid almost $1500.00 out of pocket to stay in Boston for 10 days. His Cath had to be postponed because he had an episode on the day of the original Cath, he was hypoglycemic - sugars out of whack, unresponsive and it was super scary. The Cath was completed on Monday the 9th, and the CRT was supposed to be on the 10th, but, on the 9th another heart patient was blessed with a donor heart and the doctor was in heart transplant surgery until 3am on the 10th. All of the surgeon's cases were cancelled for the 10th. The hospital asked them to stay on stand-by with daily checkins until Friday the 13th! They stayed in Boston for 10 days total - and just the lodging was over $1500.00.
While they wait for the pre-op appointment scheduled for 9am on the 24th, they are staying with family in Maryland. Macsen's dad flew back to Alabama to get at least a full week of work in before his surgery. They should expect a 2-week recovery once the CRT has been completed, and that means losing 2 additional weeks of income, while still paying all of their "normal" bills at home in Alabama, and trying to swing the cost of lodging in Boston for a minimum of 14 days.
This is an appeal for help. Any little bit will help them. If you cannot give money - please send prayers, specifically, for the doctors to proceed with no medical errors, for the CRT to work, and for the little man to heal quickly with no complications.
Thank you in advance for your consideration and assistance.
Organisator und Spendenbegünstigter
Gabrielle Fournet
Organisator
Enterprise, AL
Aaron Miller
Spendenbegünstigte
