Baby Henry
Donation protected
Ok so I know this will be against my brother’s wishes, but I know the story and I know what kind of toll it’s taken on him and his family both emotionally and financially. Although my brother and sister in law would never ask anyone for help, I know as a brother I am obligated to at least share his story and try to make some things a bit easier for him.
My nephew Henry was born on the 18th of November 2018. He was born some 3 weeks early and was quickly diagnosed with right dominant AV Canal, coarctation of the Aorta, VSD and ASD. Despite undergoing multiple prenatal echo cardiograms, his diagnosis did not completely foretell the journey that would eventually ensue. He will now have to undergo a series of procedures to repair these anomalies and will most likely spend the first 6 months of his life at Lurie's Children's Hospital under the watchful care of the many excellent professionals in the cardiac unit.
I know he and my sister in law are a strong family of faith and that they fully put their trust in God. This is why I felt compelled to do this for them, thinking that if I bring my nephew’s story to light, more can pray and hope that one day they will make it all through this.
For now Henry is on a path that they call single ventricle or technically Left Hypo PlasticHeart Syndrome. He will have to undergo 4 separate procedures over the course of his first 4 years of life, assuming that things go as planned. Henry has had to stay in the hospital his first 5 months so far. His first procedure was the PA Bands where they had to open his chest and band his pulmonary arteries to restrict blood flow. His second was the big one the Norwood, which rebuilt his Aorta, removed the PA bands from the first go around and added a BT Shunt. It is this surgery that he is still in recovery from and continues to make progress.
Over the next 6 months Henry will need to undergo a Glenn procedure to reroute his SVC. At about a year old they will repair his partial cleft palate. Then assuming all goes well at around 3.5 years old they will do the Fontan which reroutes his IVC.
Put it all together and it’s a long road ahead for Henry and his family. I know how hard it must be for them to spend each day at the hospital, all the while spending time away from the rest of the family. I also know this all came at a time when my brother is finishing his MBA studies and has started a new business late last year. So I know it hasn’t been easy for him, I see him struggle and I know we can all do something to help ease the burden. The insurance costs, the home healthcare costs, every day going to the hospital, the emotional costs, it all adds up and takes its toll. So knowing everything they have been and will have to go through, the least I could do is tell the story and get the word out.
My brother has helped a lot of people throughout his life and has never asked for anything in return, its time some of us helped him. They have been a part of the Children’s Heart Foundation for years and have taken it upon themselves to hold events in their benefit, nobody ever paid them to do it, rather they always spent time and put together yearly events knowing the money they raised helped families and researchers in the congenital heart defect field.
I know my brother and his wife would never ask, would never place an unwanted burden upon anyone else. I know my brother would say this is his cross to bear, yet it is my duty and if it just paints a picture and tells a story, and makes you think a little bit about your own life and reflect and thank God for all you have, then this would all be worth it.
For those gracious enough to be reading this, we appreciate your support.
My nephew Henry was born on the 18th of November 2018. He was born some 3 weeks early and was quickly diagnosed with right dominant AV Canal, coarctation of the Aorta, VSD and ASD. Despite undergoing multiple prenatal echo cardiograms, his diagnosis did not completely foretell the journey that would eventually ensue. He will now have to undergo a series of procedures to repair these anomalies and will most likely spend the first 6 months of his life at Lurie's Children's Hospital under the watchful care of the many excellent professionals in the cardiac unit.
I know he and my sister in law are a strong family of faith and that they fully put their trust in God. This is why I felt compelled to do this for them, thinking that if I bring my nephew’s story to light, more can pray and hope that one day they will make it all through this.
For now Henry is on a path that they call single ventricle or technically Left Hypo PlasticHeart Syndrome. He will have to undergo 4 separate procedures over the course of his first 4 years of life, assuming that things go as planned. Henry has had to stay in the hospital his first 5 months so far. His first procedure was the PA Bands where they had to open his chest and band his pulmonary arteries to restrict blood flow. His second was the big one the Norwood, which rebuilt his Aorta, removed the PA bands from the first go around and added a BT Shunt. It is this surgery that he is still in recovery from and continues to make progress.
Over the next 6 months Henry will need to undergo a Glenn procedure to reroute his SVC. At about a year old they will repair his partial cleft palate. Then assuming all goes well at around 3.5 years old they will do the Fontan which reroutes his IVC.
Put it all together and it’s a long road ahead for Henry and his family. I know how hard it must be for them to spend each day at the hospital, all the while spending time away from the rest of the family. I also know this all came at a time when my brother is finishing his MBA studies and has started a new business late last year. So I know it hasn’t been easy for him, I see him struggle and I know we can all do something to help ease the burden. The insurance costs, the home healthcare costs, every day going to the hospital, the emotional costs, it all adds up and takes its toll. So knowing everything they have been and will have to go through, the least I could do is tell the story and get the word out.
My brother has helped a lot of people throughout his life and has never asked for anything in return, its time some of us helped him. They have been a part of the Children’s Heart Foundation for years and have taken it upon themselves to hold events in their benefit, nobody ever paid them to do it, rather they always spent time and put together yearly events knowing the money they raised helped families and researchers in the congenital heart defect field.
I know my brother and his wife would never ask, would never place an unwanted burden upon anyone else. I know my brother would say this is his cross to bear, yet it is my duty and if it just paints a picture and tells a story, and makes you think a little bit about your own life and reflect and thank God for all you have, then this would all be worth it.
For those gracious enough to be reading this, we appreciate your support.
Organizer
Andrew Agne
Organizer
Riverside, IL