MY SON EMILIO IS NOW 6 AND HE HAD THE FONTAN IN 06' AND IT FAILED SO NOW HE IS BACK TO JUST THE GLENN AND WE ARE TRYING THE FONTAN THIS SUMMER JUNE 2011. BEST WISHES TO YOU AND YOR FAMILY
@dream4everlivetoday Its tough.My son is waiting for the fontan ..thinking it will be within the year.He has some other issues going on that will result in him having the fontan alot sooner.I hope your nephew is doing great and that he gets his new heart soon..Will keep him in my prayers =)
@oVanessa25o He's doing a lot better then the doctors were expecting. He had the Norwood Procedure done at 7 weeks old and had some othe complications that suspended him on the transplant list but as soon as those clear up he will be eligible for transplant.
God is up there and answers prayers. By the grace of God, I'm a 22 year old male, living with HLHS. I've had the Norwood, Glen, I believe an attempted Fontan, and a sucessful Fontan. One thing confuses me, I was 11 years old when I had the Fontan.
@MrBigrobmjca3 wow u were 11 yrs old..thats awesome.im glad to hear that there are people out there who are in there 20s living with this..sorry for getting back so late but i dont check this much..
great video! i am currently pregnant and was just told that my son has hlhs. as you can imagine i've been going nuts looking up everything there is available about it. i came across your video and its very uplifting and giving me hope. thanks for sharing
@buttabebe117 Thanx Im glad.I didnt know he had hlhs when I was pregnant do it was alot to take in that day he was born.Luckily you know now so you can do all your research and learn as much as you can about it.I would also double check with your hospital to make sure there able to handle this kinda surgery.We were flown to another state cause our hospital had very little experience with this.It was hard in the beginning.If you wanna talk I am here if you need to know something . =)
@oVanessa25o Knowing beforehand is a blessing and a curse because it makes me crazy looking up everything. I was actually referred to go to the Children's Hospital of Philadelphia(CHOP) they are number 2 in the country with heart surgery on pediactrics. The dr who developed the Norwood procedure actually worked for CHOP and developed it in Philly in the 80's. I just met with a bunch of surgeons and dr's this past week and feel very comfortable that I'm in great hands. How's Ethan doing now?
@buttabebe117 I was told about CHOP as well but Im from texas so having to travel like that would be impossible.So we went to Houston tx Texas childrens hospital which I wanna say is ranked 3rd for the heart center.I love it there.He has not had the fontan yet hes just gonna turn 2 yrs old.
my son emilio was born june 04 with hlhs also he had the norwood and glenn and he had the fontan. in 06 he had several complications he suffered a stroke and lost his hearing he had the fontan removed and is still living with only the glenn.he is doing great just waiting to redo the fontan. god bless u n your family. your son is precious. lisa vazquez
MY SON EMILIO IS NOW 6 AND HE HAD THE FONTAN IN 06' AND IT FAILED SO NOW HE IS BACK TO JUST THE GLENN AND WE ARE TRYING THE FONTAN THIS SUMMER JUNE 2011. BEST WISHES TO YOU AND YOR FAMILY
lisalisa2020 11 months ago
Comment removed
dream4everlivetoday 1 year ago
@dream4everlivetoday Its tough.My son is waiting for the fontan ..thinking it will be within the year.He has some other issues going on that will result in him having the fontan alot sooner.I hope your nephew is doing great and that he gets his new heart soon..Will keep him in my prayers =)
oVanessa25o 1 year ago
@oVanessa25o He's doing a lot better then the doctors were expecting. He had the Norwood Procedure done at 7 weeks old and had some othe complications that suspended him on the transplant list but as soon as those clear up he will be eligible for transplant.
dream4everlivetoday 1 year ago
God is up there and answers prayers. By the grace of God, I'm a 22 year old male, living with HLHS. I've had the Norwood, Glen, I believe an attempted Fontan, and a sucessful Fontan. One thing confuses me, I was 11 years old when I had the Fontan.
MrBigrobmjca3 1 year ago
@MrBigrobmjca3 wow u were 11 yrs old..thats awesome.im glad to hear that there are people out there who are in there 20s living with this..sorry for getting back so late but i dont check this much..
oVanessa25o 1 year ago
Way to go ETHAN..:+)
springtime65 1 year ago
@springtime65 =)
oVanessa25o 1 year ago
hi my son was born on 20/11/07 and also had HLHS but saddly he grew his angel wings on 28/12/07, very much missed.
Ethan is such a little cutie x
clairence74 1 year ago
@clairence74 thank you
oVanessa25o 1 year ago
@clairence74 Sorry to hear about your son.Once a heart parent always a heart parent.My heart goes out to you but you will never be forgotten.
oVanessa25o 1 year ago
great video! i am currently pregnant and was just told that my son has hlhs. as you can imagine i've been going nuts looking up everything there is available about it. i came across your video and its very uplifting and giving me hope. thanks for sharing
buttabebe117 1 year ago
@buttabebe117 Thanx Im glad.I didnt know he had hlhs when I was pregnant do it was alot to take in that day he was born.Luckily you know now so you can do all your research and learn as much as you can about it.I would also double check with your hospital to make sure there able to handle this kinda surgery.We were flown to another state cause our hospital had very little experience with this.It was hard in the beginning.If you wanna talk I am here if you need to know something . =)
oVanessa25o 1 year ago
@oVanessa25o Knowing beforehand is a blessing and a curse because it makes me crazy looking up everything. I was actually referred to go to the Children's Hospital of Philadelphia(CHOP) they are number 2 in the country with heart surgery on pediactrics. The dr who developed the Norwood procedure actually worked for CHOP and developed it in Philly in the 80's. I just met with a bunch of surgeons and dr's this past week and feel very comfortable that I'm in great hands. How's Ethan doing now?
buttabebe117 1 year ago
@ovanessa25o did he get his fontan operation yet?
buttabebe117 1 year ago
@buttabebe117 I was told about CHOP as well but Im from texas so having to travel like that would be impossible.So we went to Houston tx Texas childrens hospital which I wanna say is ranked 3rd for the heart center.I love it there.He has not had the fontan yet hes just gonna turn 2 yrs old.
oVanessa25o 1 year ago
my son emilio was born june 04 with hlhs also he had the norwood and glenn and he had the fontan. in 06 he had several complications he suffered a stroke and lost his hearing he had the fontan removed and is still living with only the glenn.he is doing great just waiting to redo the fontan. god bless u n your family. your son is precious. lisa vazquez
lisalisa2020 2 years ago
God Bless you Ethan .
mamichristie 2 years ago
my son was born on 8-18-08 and also had HLHS and passed away on 1-26-09 peacfully and unispected.
what an adorable little boy = )
talhateen101 2 years ago
Im truly sorry for your lose.
All Congenital Heart Defect children are Angels =)
Gods little miracles
oVanessa25o 2 years ago