best kids bikes australia image
I love emo
Not racing down the streets of the city, racing at stadiums like moto GP and stuff.
Answer
Here in Australia many of the guys start out racing mx and I do know someone who made the shift to road not that long ago. The reason for starting on mx bikes is that here you are not allowed to road race till you are 16 years old, so there is nothing for the kids prior to that.
Not everyone does it that way but many do. It is hard to get into due to the cost of the bikes and one race is going to set the rider back quite a bit unless they have support which is not all that readily available here in Australia.
Here in Australia many of the guys start out racing mx and I do know someone who made the shift to road not that long ago. The reason for starting on mx bikes is that here you are not allowed to road race till you are 16 years old, so there is nothing for the kids prior to that.
Not everyone does it that way but many do. It is hard to get into due to the cost of the bikes and one race is going to set the rider back quite a bit unless they have support which is not all that readily available here in Australia.
what are my babys chances of living with Hypo-plastic left heart?
Kerri
im 26 weeks right now and my baby boy has hypo-plastic left heart syndrome. so i was just wondering what are his chances of survival, what are some of the complications after birth and when you get to take the baby home? also i was wondering are the surgeries actually legit. will he be able to be a normal kid? i'm very scared about all this. i know the is a very serious condition and sometimes fetal, but i need some advice and on these questions. i really don't wanna lose my baby i don't know what i would do.
Answer
Hi, I'm Rebecca, I'm 13 years old (14 in a week or so) and I was born with both complex hypoplastic left heart syndrome *and* total anomalous pulmonary venous drainage. Your little boy *CAN* survive with HLHS and *CAN* be a normal kid. It is soooo *NOT* true when people say kids with HLHS will never run around or ride a bike or kick a football. As a group we're growing up, going to school, playing sports, going to uni, holding down jobs, getting married just like "heart healthy" people.
Your boy's chances of surviving now are higher than they have ever been. On average survival rates worldwide are around 60% but there are centres in the world with significantly higher numbers of HLHS kids making it to their 5th birthday (which is how survival rates are calculated), even as high as 90%. The toughest, most nerve racking, riskiest time is the few days after the first of the surgeries. As a general rule, HLHS babies who make it through their first surgery and immediate recovery period almost always seem to make it home.
Make sure you check out the survival rates of the hospital and surgeon though as they are *very*, *very* variable. Don't know where you are (In Australia, you want to go to the Kids Hospital in Melbourne; Auckland's good too; in the UK, have your baby treated at Birmingham Children's Hospital or one of the London centres (Gt Ormond Street, St Thomas' or the Royal Brompton). Don't know which are the best hospitals to go to in the US - make sure you take advice from other local HLHS parents before deciding rather than just going with the doctors' recommendation. Much though will depend on the extent of your son's HLHS and his overall health at birth.
when you get to take the baby home? If you live near enough to the hospital you should be able to take your baby home after his first surgery (done within the first couple of days of life); if you're too far away you may have to stay local to the hospital but should still be able to take him out of hospital either to parent accomodation or rented accomodation. You'll have to return to the hospital for his second surgery, usually done at around 4 - 6 months old. Providing he comes through his second operation, you'll get to take him home and not have to return to the hospital except for check ups until his third surgery, usually done when the child is aged 3 or 4 (i.e. prior to starting school). In the US it is usually done earlier though at around 2 years old.
i was wondering are the surgeries actually legit.
By the surgeries I presume you mean the 3 stage reconstructive surgery (Norwood, BCPS (or Glenn) and Fontan). Yes, they are legit. The first Fontan surgery was carried out on babies in something like 1972 - it's a surgery that's been done on heart kids for a looong time anyway. The first Norwood operation was done in 1982. It used to be done as one surgery but is now divided up as babies do better that way. My point anyway these are long standing surgeries that have been used successfully on heart kids all over the world for many, many years.
will he be able to be a normal kid?
See above
i'm very scared about all this.
Of course you are.
You and your son do have one big advantage though; he's been diagnosed before birth and so will be setting out on his surgeries etc in the best possible condition. The cardiac team will be expecting him, he can be transferred immediately to either CICU or the Children's heart ward (depending on his condition and local policy), he can be started on the prostaglandins at birth to stop any of the pre-birth holes in his heart from closing. He won't be arriving as an emergency already in cardiogenic shock and/or total circulatory collapse as can happen when HLHS isn't diagnosed until the baby is already several days old.
i know the is a very serious condition and sometimes fetal (sic), but i need some advice and on these questions.
You need to start making contact with other HLHS families in your location. They'll be able to reassure you most of all. They can also tell you the best cardiologist, best cardiac surgeon etc in your region.
Hi, I'm Rebecca, I'm 13 years old (14 in a week or so) and I was born with both complex hypoplastic left heart syndrome *and* total anomalous pulmonary venous drainage. Your little boy *CAN* survive with HLHS and *CAN* be a normal kid. It is soooo *NOT* true when people say kids with HLHS will never run around or ride a bike or kick a football. As a group we're growing up, going to school, playing sports, going to uni, holding down jobs, getting married just like "heart healthy" people.
Your boy's chances of surviving now are higher than they have ever been. On average survival rates worldwide are around 60% but there are centres in the world with significantly higher numbers of HLHS kids making it to their 5th birthday (which is how survival rates are calculated), even as high as 90%. The toughest, most nerve racking, riskiest time is the few days after the first of the surgeries. As a general rule, HLHS babies who make it through their first surgery and immediate recovery period almost always seem to make it home.
Make sure you check out the survival rates of the hospital and surgeon though as they are *very*, *very* variable. Don't know where you are (In Australia, you want to go to the Kids Hospital in Melbourne; Auckland's good too; in the UK, have your baby treated at Birmingham Children's Hospital or one of the London centres (Gt Ormond Street, St Thomas' or the Royal Brompton). Don't know which are the best hospitals to go to in the US - make sure you take advice from other local HLHS parents before deciding rather than just going with the doctors' recommendation. Much though will depend on the extent of your son's HLHS and his overall health at birth.
when you get to take the baby home? If you live near enough to the hospital you should be able to take your baby home after his first surgery (done within the first couple of days of life); if you're too far away you may have to stay local to the hospital but should still be able to take him out of hospital either to parent accomodation or rented accomodation. You'll have to return to the hospital for his second surgery, usually done at around 4 - 6 months old. Providing he comes through his second operation, you'll get to take him home and not have to return to the hospital except for check ups until his third surgery, usually done when the child is aged 3 or 4 (i.e. prior to starting school). In the US it is usually done earlier though at around 2 years old.
i was wondering are the surgeries actually legit.
By the surgeries I presume you mean the 3 stage reconstructive surgery (Norwood, BCPS (or Glenn) and Fontan). Yes, they are legit. The first Fontan surgery was carried out on babies in something like 1972 - it's a surgery that's been done on heart kids for a looong time anyway. The first Norwood operation was done in 1982. It used to be done as one surgery but is now divided up as babies do better that way. My point anyway these are long standing surgeries that have been used successfully on heart kids all over the world for many, many years.
will he be able to be a normal kid?
See above
i'm very scared about all this.
Of course you are.
You and your son do have one big advantage though; he's been diagnosed before birth and so will be setting out on his surgeries etc in the best possible condition. The cardiac team will be expecting him, he can be transferred immediately to either CICU or the Children's heart ward (depending on his condition and local policy), he can be started on the prostaglandins at birth to stop any of the pre-birth holes in his heart from closing. He won't be arriving as an emergency already in cardiogenic shock and/or total circulatory collapse as can happen when HLHS isn't diagnosed until the baby is already several days old.
i know the is a very serious condition and sometimes fetal (sic), but i need some advice and on these questions.
You need to start making contact with other HLHS families in your location. They'll be able to reassure you most of all. They can also tell you the best cardiologist, best cardiac surgeon etc in your region.
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