When
the Cystic Fibrosis Foundation was established in 1955, children with cystic
fibrosis (CF) rarely lived long enough to attend elementary school. Due in
large part to the CF Foundation's aggressive investments in innovative research
and comprehensive care, many people with the disease can now expect to live
into their 30s, 40s and beyond.
Maxwell was diagnosed in utero, at 20 weeks gestation, with hypoplastic left heart syndrome (HLHS). We were scared and confused since we are two young, healthy people. The prenatal diagnosis gave us the chance to meet with the cardiologists and surgeons prior to Maxwell's birth and make some decisions about what type of treatment we would choose for him. As it turned out, our local children's hospital had recently hired a new surgeon, who specialized in minimally invasive treatment of HLHS.
Maxwell was diagnosed in utero, at 20 weeks gestation, with hypoplastic left heart syndrome (HLHS). We were scared and confused since we are two young, healthy people. The prenatal diagnosis gave us the chance to meet with the cardiologists and surgeons prior to Maxwell's birth and make some decisions about what type of treatment we would choose for him. As it turned out, our local children's hospital had recently hired a new surgeon, who specialized in minimally invasive treatment of HLHS.
He offered us an alternative to the traditional strategies that included PA banding and PDA stents, as opposed to a Norwood stage I, which is a very difficult surgery for a little body. This all went well, and outside of feeding issues, he had an uneventful course. The feeding tube kept us in the hospital for 38 days, but eventually we got home.
Maxwell's second surgery happened on February 24th, 2003, when he was 3 months, 2 days old. During this major surgery, he had aortic arch reconstruction, PA de-banding, ductus stent removal, D.K.S. and a bi-directional Glenn shunt, taking him to a "hemi-Fontan".
We had two wonderful, uneventful years after that and had no medical interventions until March of 2005, when he had a catheterization. After the cath we decided that it was time to move forward with the Fontan and scheduled it for May. Maxwell had a modified version of the extra-cardiac Fontan using ¾ of his own pericardium and a patch of bovine pericardium to complete the conduit. Only our surgeon does it and it is amazing. There is no circulatory arrest and the heart is never stopped, so they do not have to go through the trauma of all of that. So my son, with a single ventricle, made it to the Fontan, only having been in circulatory arrest one time.
We are so grateful for all that has been done for him, and hope that our story inspires others to give their kids a fighting chance and believe that they can be healthy, happy kids, no matter what type of heart they have.
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When
the Cystic Fibrosis Foundation was established in 1955, children with cystic
fibrosis (CF) rarely lived long enough to attend elementary school. Due in
large part to the CF Foundation's aggressive investments in innovative research
and comprehensive care, many people with the disease can now expect to live
into their 30s, 40s and beyond.
Maxwell was diagnosed in utero, at 20 weeks gestation, with hypoplastic left heart syndrome (HLHS). We were scared and confused since we are two young, healthy people. The prenatal diagnosis gave us the chance to meet with the cardiologists and surgeons prior to Maxwell's birth and make some decisions about what type of treatment we would choose for him. As it turned out, our local children's hospital had recently hired a new surgeon, who specialized in minimally invasive treatment of HLHS.
Maxwell was diagnosed in utero, at 20 weeks gestation, with hypoplastic left heart syndrome (HLHS). We were scared and confused since we are two young, healthy people. The prenatal diagnosis gave us the chance to meet with the cardiologists and surgeons prior to Maxwell's birth and make some decisions about what type of treatment we would choose for him. As it turned out, our local children's hospital had recently hired a new surgeon, who specialized in minimally invasive treatment of HLHS. 
We are so grateful for all that has been done for him, and hope that our story inspires others to give their kids a fighting chance and believe that they can be healthy, happy kids, no matter what type of heart they have.
