Newborn with Tetralogy of Fallot
Hello, my daughter is 3 days old and she has been diagnosed with TOF or "Blue Baby syndrome" The Cardiologist says it's a very mild case yet will need surgery to repair. Has anyone here ever had this done or have a child that has had this operation? She looks and acts very normal, she has very good color even when she's mad or crying. I was just wondering if anyone could help me out with some experience. Thank you very much.
btw, the Dr's want to wait untill she is around a year old to perform surgery.
Answers:
I have not had a child with this situation; however, I have known of two children that have suffered from this. One required surgery and the other was fixed by meds. Has the dr yet tried meds? It is not an uncommon thing to occur and can be easily resolved. I wish you the best of luck.
Answers:
hi my daughter has tetrallogy of fallot the doctors told us that when she was born she wasn;t getting her blood oxygenated so they did an operation it;s called a (Bt shunt) it's like a little plastic tube that goes on the side of her heart and its giving oxygen to the body they did this while they wait to do the heart surgery they said until she's a year old but she's 2 now and haven't done it , they haven't done it because on a heart catherization that they did they found ot that she had a little hole that it's supposed to close when they're babies, she had it open and that's giving oxygen to her body ,she has the shunt and that little hole helping her, the doctor said he wanted to wait until her saturation level goes in the 70's and she's like 85's so now that she's 2 they're thinking about doing the surgery in about 4 months because they know that that little hole is never going to close. and when they did the bt shunt they injured her daighfram making it difficult for her to breath and now she has a ventilator and a tracheostomy.
PS:Be a part of everything that they do to your daughter if you don't think it's right don't let them do it they are wrong most of the time take care of her. [removed] goodbye :cool: :wave:
Answers:
They (the dr.'s) have told that babies with this type of heart defect usually need two operations, but that our daughter will probably only need one. About the medication to help, they haven't said anything to us about medication curing this defect, they told us she would need surgery and there's no way around it.
Lanena, how bad is your daughter's condition? When did they perform her first operation? Was she blue after she was born or did she appear normal and pink? That part about them damaging her diaphram has me a bit worried. They are telling us that they'd like to do surgery when she is closer to 1 year old.
The cardiologist told us that this is a very common defect and that the operation is pretty routine now days, but when someone tells you that your baby needs heart surgery, it scares the hell out of you.
Answers:
They (the dr.'s) have told that babies with this type of heart defect usually need two operations, but that our daughter will probably only need one. About the medication to help, they haven't said anything to us about medication curing this defect, they told us she would need surgery and there's no way around it.
Lanena, how bad is your daughter's condition? When did they perform her first operation? Was she blue after she was born or did she appear normal and pink? That part about them damaging her diaphram has me a bit worried. They are telling us that they'd like to do surgery when she is closer to 1 year old.
The cardiologist told us that this is a very common defect and that the operation is pretty routine now days, but when someone tells you that your baby needs heart surgery, it scares the hell out of you. well our baby's heart defect is really not that much of a problem it's more her diaphram than the heart that's why she has the machine and to help her lungs expand and yeah when she was born she was blue and then they took her to the NICU and put her on a breathing machine and had her sedated they didn't want her to do any struggle or anything like that and they also put a mickey button in for her to eat her food but be real careful because they always want to do everything that the baby doesn't need and it make the babies struggle more , like jessica maybe she would have been fine if they had let her breathe on her own but NO they had to put a ventilator on and that was a big mistake because it made her lungs have a lot of scarring that's why she has the vent too so we're hoping that the heart surgery will help her with her lungs and make them better ,so her blood flows better she does have bad circulation because she's not really pink she's more sort of yellowish and a little pink so maybe this surgery will help her a lot with her circulation and you know that your baby might be on a ventilator after heart surgery but not for very long since your baby has healthy lungs right? well goodbye for now god bless.Sarah
btw, the Dr's want to wait untill she is around a year old to perform surgery.
Answers:
I have not had a child with this situation; however, I have known of two children that have suffered from this. One required surgery and the other was fixed by meds. Has the dr yet tried meds? It is not an uncommon thing to occur and can be easily resolved. I wish you the best of luck.
Answers:
hi my daughter has tetrallogy of fallot the doctors told us that when she was born she wasn;t getting her blood oxygenated so they did an operation it;s called a (Bt shunt) it's like a little plastic tube that goes on the side of her heart and its giving oxygen to the body they did this while they wait to do the heart surgery they said until she's a year old but she's 2 now and haven't done it , they haven't done it because on a heart catherization that they did they found ot that she had a little hole that it's supposed to close when they're babies, she had it open and that's giving oxygen to her body ,she has the shunt and that little hole helping her, the doctor said he wanted to wait until her saturation level goes in the 70's and she's like 85's so now that she's 2 they're thinking about doing the surgery in about 4 months because they know that that little hole is never going to close. and when they did the bt shunt they injured her daighfram making it difficult for her to breath and now she has a ventilator and a tracheostomy.
PS:Be a part of everything that they do to your daughter if you don't think it's right don't let them do it they are wrong most of the time take care of her. [removed] goodbye :cool: :wave:
Answers:
They (the dr.'s) have told that babies with this type of heart defect usually need two operations, but that our daughter will probably only need one. About the medication to help, they haven't said anything to us about medication curing this defect, they told us she would need surgery and there's no way around it.
Lanena, how bad is your daughter's condition? When did they perform her first operation? Was she blue after she was born or did she appear normal and pink? That part about them damaging her diaphram has me a bit worried. They are telling us that they'd like to do surgery when she is closer to 1 year old.
The cardiologist told us that this is a very common defect and that the operation is pretty routine now days, but when someone tells you that your baby needs heart surgery, it scares the hell out of you.
Answers:
They (the dr.'s) have told that babies with this type of heart defect usually need two operations, but that our daughter will probably only need one. About the medication to help, they haven't said anything to us about medication curing this defect, they told us she would need surgery and there's no way around it.
Lanena, how bad is your daughter's condition? When did they perform her first operation? Was she blue after she was born or did she appear normal and pink? That part about them damaging her diaphram has me a bit worried. They are telling us that they'd like to do surgery when she is closer to 1 year old.
The cardiologist told us that this is a very common defect and that the operation is pretty routine now days, but when someone tells you that your baby needs heart surgery, it scares the hell out of you. well our baby's heart defect is really not that much of a problem it's more her diaphram than the heart that's why she has the machine and to help her lungs expand and yeah when she was born she was blue and then they took her to the NICU and put her on a breathing machine and had her sedated they didn't want her to do any struggle or anything like that and they also put a mickey button in for her to eat her food but be real careful because they always want to do everything that the baby doesn't need and it make the babies struggle more , like jessica maybe she would have been fine if they had let her breathe on her own but NO they had to put a ventilator on and that was a big mistake because it made her lungs have a lot of scarring that's why she has the vent too so we're hoping that the heart surgery will help her with her lungs and make them better ,so her blood flows better she does have bad circulation because she's not really pink she's more sort of yellowish and a little pink so maybe this surgery will help her a lot with her circulation and you know that your baby might be on a ventilator after heart surgery but not for very long since your baby has healthy lungs right? well goodbye for now god bless.Sarah