*Pictures of Xavier Ross are property of his Parents and used with full permission*
This Article is a little bit different from most you see posted by us. We decided to do this because February is heart awareness month. We wanted everyone to know that heart disease can strike any one at any age any time. It does not matter if you are a newborn or even still in your mother's womb you can still have some type of heart disease.
Heart disease is the leading cause of death each year in the us. It kills 600,000+ American adults each year. Which equals out to approximately a quarter of all deaths. 715,000 American adults have a heart attack every year. Out of these 525,000 are the first one for the victims, the reaming 190,000 are repeat attacks.
Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.There are an estimated 2,000,000 CHD survivors in the United States.
Of curse heart disease can strike children as well, Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD. Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
One million babies are born with a heart defect each year. Many newborns with CHD need feeding tubes for different reasons whether its due to them getting tired to easily or they burn too many calories or that they might have paralyzed vocal cords from surgery.
The national birth defect prevention network estimates that birth defects occur in about 3% of live births in the us and out of those birth defects HLHS occurs in one out of 4,344 live births or an estimated 960 live births each year in the us HLHS occurs at a 1/6% of children born with down syndrome witch is the most common birth defect in the us.
Ok so we know what you are thinking but what is HLHS well the answer is:
Hypoplastic left heart syndrome or other wise known as HLHS is a serve congenital heart defect in witch the left side of the heart is under developed. The hearts left side has the job of pumping oxygenated blood in to the arota (the large artery that carries blood through the body) Babies with HLHS might not show sings for the first few days while the patent ductus arterious and the patent foramen ovale(the normal openings in the heart) are open But quickly develope problems after these opening are closed sings include problems breathing, pounding heart, weak pulse, or ashen or bluish skin color.
Where HLHS can not be cured it can be treated by making the child's circulation work with only two of the four chambers by under going 3 stages of surgery with in the child's first 5 years.
The 3 stages:
Step 1: Norwood procedure
The first step is the Norwood procedure. In this procedure, the right ventricle is used to pump blood into the systemic circulation. Since the right ventricle is no longer directly pumping blood to the lungs, a shunt is required in order to pass deoxygenated blood through the lungs. Either the subclavian artery can be connected to the pulmonary circulation (Blalock-Taussig shunt), or a shunt is made directly from the right ventricle to the pulmonary circulation (Sano shunt). The narrow aorta is enlarged using a patch to improve blood flow to the body.
During this time the baby may be medically fragile and have feeding problems because the heart is working very hard. There is a considerable degree of venous mixing in the right ventricle, leading to lower oxygenation saturation. In addition, the Blalock-Taussig shunt and the Sano shunt both expose the lungs to systemic arterial pressures, leading in the long term to pulm
The Norwood Procedure is generally performed within a week of birth.
Hybrid procedure
The Hybrid procedure is used in place of the Norwood. The Hybrid procedure does not necessitate the use of heart-lung bypass or performing a sternotomy. Instead of a six-hour surgery, the Hybrid typically takes one to two hours. In the procedure, a stent is placed in the Ductus Arteriosis to maintain its patency, and the Pulmonary Artery branches has bands placed over both right and left branches to limit pressure and over-circulation to the lungs. Outcomes with the Hybrid approach are comparable with the Norwood.
Step 2: Glenn procedure
The second stage, the bi-directional Glenn procedure or Hemi-Fontan (see also Kawashima procedure) relieves some of the above problems. In this operation, the superior vena cava is ligated from the heart and connected to the pulmonary circulation. At this time, the Blalock-Taussig or Sano shunt is taken down. At this point, the lungs are no longer exposed to systemic arterial pressures, but much lower venous pressures. Although venous blood from the upper half of the body is no longer mixing with oxygenated blood in the right ventricle, there is still venous mixing from the lower half of the body, leading to some degree of oxygen desaturation.
During this time the child may have improved quality of life as the heart does not have to work as hard.
usually at 3–6 months of age
Step 3: Fontan procedure
The final procedure, the Fontan (Fontan procedure) completes the repair of the hypoplastic left heart. Although there are several variations, the functional effect is to redirect venous blood from the lower body (through the inferior vena cava) away from the right atrium to the pulmonary artery. Now, there should not be any mixing of oxygenated and deoxygenated blood in the right ventricle. The right ventricle performs the traditional job of the left, supplying the body with oxygenated blood, while the passive systemic venous pressure performs the traditional job of the right, passing deoxygenated blood to the lungs.
usally between 18 months and four years of age.
before The three stages were developed in the 1980s there was no survivors so at the moment the earliest survivors are only in there 30s and the long term prognosis is still unknown at the moment.
While the infants successfully treated for HLHS have a good chance of survival they my experience chronic heart problems for the rest of their lives and run a higher risk of endocarditis and must be monitored by a cardiologist for the rest of their lives to check on their heart function.
Meet Xavier
On Saturday May 28th, 2011 Nate Ross and his wife Jackie Ross welcomed their beautiful blonde hair blue eye 6lb 13oz 19 inch long baby boy Xavier Thomas Ross in to the world he was born at CHOP(Children's Hospital Of Philadelphia) he was born with HLHS. Then just five days later on June 1st 2011 he underwent his first surgery when he had his norwood. Then in October of the same year he underwent his second surgery when he went in for his glen. Then this past year 2013 in June he went in for a value repair surgery and then less then a month later in July he found him self needing to go under the knife once again when they needed to install a pacemaker. This coming fall Xavier will go in for his 5th heart surgery in his life this not including his caths or any other hospital stays/visits he has had. His mother Jackie runs a blog called xtra special heart that she started when he was just a baby to keep his family, friends, and fans updated on him and help other people learn the type of life that a child living with HLHS can live. Look at Xavier he does stuff that any 2 and a half year olds, do he plays in the snow, plays with his friends, goes on vacations with his family, goes to preschool,l he even trick or treats. Like most kids he has nick names he is called X-man and also just X. However there is a few thing that he does that not all kids do like seeing a physical therapist or having frequent doctor visits. He is gonna need life time care for his heart, he will need to be on medications, he will need to have EKGs, ECHOs, cardiac caths, and he could need more surgeries in his life time but with all of these things a side he is just a normal kid one more thing that puts him in the like any other kid category is he loves his new baby sister named Ellie that was born on Christmas eve.
To learn more about Xavier and keep up with him in the future check out Jackie's blog or X's fan page over on Facebook links for both are below!
This Article is a little bit different from most you see posted by us. We decided to do this because February is heart awareness month. We wanted everyone to know that heart disease can strike any one at any age any time. It does not matter if you are a newborn or even still in your mother's womb you can still have some type of heart disease.
Heart disease is the leading cause of death each year in the us. It kills 600,000+ American adults each year. Which equals out to approximately a quarter of all deaths. 715,000 American adults have a heart attack every year. Out of these 525,000 are the first one for the victims, the reaming 190,000 are repeat attacks.
Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.There are an estimated 2,000,000 CHD survivors in the United States.
Of curse heart disease can strike children as well, Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD. Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
One million babies are born with a heart defect each year. Many newborns with CHD need feeding tubes for different reasons whether its due to them getting tired to easily or they burn too many calories or that they might have paralyzed vocal cords from surgery.
The national birth defect prevention network estimates that birth defects occur in about 3% of live births in the us and out of those birth defects HLHS occurs in one out of 4,344 live births or an estimated 960 live births each year in the us HLHS occurs at a 1/6% of children born with down syndrome witch is the most common birth defect in the us.
Ok so we know what you are thinking but what is HLHS well the answer is:
Hypoplastic left heart syndrome or other wise known as HLHS is a serve congenital heart defect in witch the left side of the heart is under developed. The hearts left side has the job of pumping oxygenated blood in to the arota (the large artery that carries blood through the body) Babies with HLHS might not show sings for the first few days while the patent ductus arterious and the patent foramen ovale(the normal openings in the heart) are open But quickly develope problems after these opening are closed sings include problems breathing, pounding heart, weak pulse, or ashen or bluish skin color.
Where HLHS can not be cured it can be treated by making the child's circulation work with only two of the four chambers by under going 3 stages of surgery with in the child's first 5 years.
The 3 stages:
Step 1: Norwood procedure
The first step is the Norwood procedure. In this procedure, the right ventricle is used to pump blood into the systemic circulation. Since the right ventricle is no longer directly pumping blood to the lungs, a shunt is required in order to pass deoxygenated blood through the lungs. Either the subclavian artery can be connected to the pulmonary circulation (Blalock-Taussig shunt), or a shunt is made directly from the right ventricle to the pulmonary circulation (Sano shunt). The narrow aorta is enlarged using a patch to improve blood flow to the body.
During this time the baby may be medically fragile and have feeding problems because the heart is working very hard. There is a considerable degree of venous mixing in the right ventricle, leading to lower oxygenation saturation. In addition, the Blalock-Taussig shunt and the Sano shunt both expose the lungs to systemic arterial pressures, leading in the long term to pulm
The Norwood Procedure is generally performed within a week of birth.
Hybrid procedure
The Hybrid procedure is used in place of the Norwood. The Hybrid procedure does not necessitate the use of heart-lung bypass or performing a sternotomy. Instead of a six-hour surgery, the Hybrid typically takes one to two hours. In the procedure, a stent is placed in the Ductus Arteriosis to maintain its patency, and the Pulmonary Artery branches has bands placed over both right and left branches to limit pressure and over-circulation to the lungs. Outcomes with the Hybrid approach are comparable with the Norwood.
Step 2: Glenn procedure
The second stage, the bi-directional Glenn procedure or Hemi-Fontan (see also Kawashima procedure) relieves some of the above problems. In this operation, the superior vena cava is ligated from the heart and connected to the pulmonary circulation. At this time, the Blalock-Taussig or Sano shunt is taken down. At this point, the lungs are no longer exposed to systemic arterial pressures, but much lower venous pressures. Although venous blood from the upper half of the body is no longer mixing with oxygenated blood in the right ventricle, there is still venous mixing from the lower half of the body, leading to some degree of oxygen desaturation.
During this time the child may have improved quality of life as the heart does not have to work as hard.
usually at 3–6 months of age
Step 3: Fontan procedure
The final procedure, the Fontan (Fontan procedure) completes the repair of the hypoplastic left heart. Although there are several variations, the functional effect is to redirect venous blood from the lower body (through the inferior vena cava) away from the right atrium to the pulmonary artery. Now, there should not be any mixing of oxygenated and deoxygenated blood in the right ventricle. The right ventricle performs the traditional job of the left, supplying the body with oxygenated blood, while the passive systemic venous pressure performs the traditional job of the right, passing deoxygenated blood to the lungs.
usally between 18 months and four years of age.
before The three stages were developed in the 1980s there was no survivors so at the moment the earliest survivors are only in there 30s and the long term prognosis is still unknown at the moment.
While the infants successfully treated for HLHS have a good chance of survival they my experience chronic heart problems for the rest of their lives and run a higher risk of endocarditis and must be monitored by a cardiologist for the rest of their lives to check on their heart function.
Meet Xavier
On Saturday May 28th, 2011 Nate Ross and his wife Jackie Ross welcomed their beautiful blonde hair blue eye 6lb 13oz 19 inch long baby boy Xavier Thomas Ross in to the world he was born at CHOP(Children's Hospital Of Philadelphia) he was born with HLHS. Then just five days later on June 1st 2011 he underwent his first surgery when he had his norwood. Then in October of the same year he underwent his second surgery when he went in for his glen. Then this past year 2013 in June he went in for a value repair surgery and then less then a month later in July he found him self needing to go under the knife once again when they needed to install a pacemaker. This coming fall Xavier will go in for his 5th heart surgery in his life this not including his caths or any other hospital stays/visits he has had. His mother Jackie runs a blog called xtra special heart that she started when he was just a baby to keep his family, friends, and fans updated on him and help other people learn the type of life that a child living with HLHS can live. Look at Xavier he does stuff that any 2 and a half year olds, do he plays in the snow, plays with his friends, goes on vacations with his family, goes to preschool,l he even trick or treats. Like most kids he has nick names he is called X-man and also just X. However there is a few thing that he does that not all kids do like seeing a physical therapist or having frequent doctor visits. He is gonna need life time care for his heart, he will need to be on medications, he will need to have EKGs, ECHOs, cardiac caths, and he could need more surgeries in his life time but with all of these things a side he is just a normal kid one more thing that puts him in the like any other kid category is he loves his new baby sister named Ellie that was born on Christmas eve.
To learn more about Xavier and keep up with him in the future check out Jackie's blog or X's fan page over on Facebook links for both are below!
Jackie's blog
http://xaviersheartjourney.blogspot.com/
x fan page
https://www.facebook.com/TeamXtremeFriendsFamilyAndFansOfXavierThomasRoss
http://xaviersheartjourney.blogspot.com/
x fan page
https://www.facebook.com/TeamXtremeFriendsFamilyAndFansOfXavierThomasRoss
