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.

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.

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:

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.

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

oh by the way is your baby taking any med right now and which ones?

Hi,
I was blue baby. I had a hole the size of quarter and 3 veins that were hooked up to the right side of my heart and should have been hooked up to the left. Basically when I had the surgery the right side of my heart was 80% bigger than the left. I was 19 when they discovered this deffect and would have died by age 25 if they had not repaired it. Anyway, what kind of test have they done on your baby? I am 30 now. As a child I had no real symptoms besides asthma. I ran track, played soccer, and danced competively. The reason I mention this is b/c there might be more deffects than just the initial diagnosis. My doc said that childrens' bodies can compensate sometimes for things. When we found out I had the deffect my parents insisted we travel to the Mayo Clinic in Minnesota to get a full diagnosis. We arrived on a Monday and by Thursday I was having surgery. I would make sure that your cardiologist is not just going to do some exploritory heart surgery!!!

oh by the way is your baby taking any med right now and which ones?

No she is not on any meds right now. She is doing very well so far, no blue spells, eats very well and she is also very strong. She already lifts her head up and when we lay her on her stomach she tries to scoot herself around.

Anyway, what kind of test have they done on your baby?

She has had chest x-rays, an echo and an ekg. Plus various bloodwork.

Jasaac, if you don't mind me asking, how long was your hospital stay? They are telling us that she will be in the hospital for at least 7-10 days.

Hi, I am not a doctor but i do work with babies who are ill. Defects run the gamut from mild cases to severe cases. Some babies need surgery right away, some do not depending on the individual situation. You should have your cardiologist/surgeon explain it all to you and draw pictures. They can also recommend some reading for you. Information always seems to help me. I would also ask if there is a parent support group at your nicu (or if you are home now in the pediatric dept of the hosp). They may be able to hook you in with some other parents in your city who have been through what you are going through and are now volunteering to help others through it.
Cardiac problems are not always noticeable at birth. I have a friend who had a congenital cardiac problem which wasn't picked up and gave him no problems until his 50's! So, each case can be really unique.

Hello, this is colzdad. I changed my user name a while back. My daughter had her TOF repaired in June of 2005. She is now 2 1/2 years old. She did extremely well through out the surgery and recovery time. She was out of the hospital in 4 days, which was great for us. She now is on an annual visitation with the Cardiologist. We last took her on Halloween and they said she is doing fine. She could possibly have to have another surgery later in life, but we'll worry about that when it gets here. She will also have to see a cardiologist for the rest of her life.

If anyone has a child with this condition, I strongly recommend seeing the movie 'Something The Lord Made'. It deals with the surgeons who first developed the BT Shunt that someone mentioned earlier in this thread.

Jeff, if you have any questions, feel free to ask. I will do the best I can to help you out. Has your baby had the repair yet? I hope all is well.

My daughter had her surgery in June of 2005 Here in Louisville, Ky. We have a great team of Heart surgeons here, which was a big help. Also, I work in surgery at the hospital where she had her repair done and I personally knew everyone from the Surgeon down to the person who who cleans the room. They took very good care of her, but it was still very scary for my wife and I.

My girl has dark hair and brown eyes. They told us (the Cardiologists) that there really wasn't a specific trait that is common in babies with TOF, nor do they know if it is hereditary. She is doing great, if not for the scar on her chest from the surgery incision and chest tube scars, you would never even know anything was ever wrong with her.

She is a bit small, but that is supposedly common in babies with heart defects. She's not abnormally small, just a bit on the skinny side. They told us to feed her lots of fattening food to get her weight up, but I don't want to get her started on the McDonalds and all because I don't want her to end up being too big with her heart condition.

Hi Jasaac,

do you mind me asking how you were diagnosed with the heart condition? were you getting pains etc/
xmex