Tetralogy of Fallot
- Thread starter TMonster
- Start date
going_crazy
Still learning.....!
- Joined
- Jan 21, 2010
- Messages
- 2,864
- Reaction score
- 0
Hi, my DD was born with TOF-type heart defects... She's 2 and a half now. If you've got any questions feel free to ask, but I'm in the UK and things can differ slightly.
It's actually good news that you've found out now because your daughter (and you) will be given the best care possible and everything will be in place
Hope you are ok xxx
It's actually good news that you've found out now because your daughter (and you) will be given the best care possible and everything will be in place
Hope you are ok xxx
S
Siyren
Guest
Hey Hun- my daughter has absent pulmonary valve syndrome- which is another Chd. Feel free to pm me.
Going crazy and I have talked a lot too- there are a few of us heart mummy's on here and we all support each other. X
Going crazy and I have talked a lot too- there are a few of us heart mummy's on here and we all support each other. X
going_crazy
Still learning.....!
- Joined
- Jan 21, 2010
- Messages
- 2,864
- Reaction score
- 0
Hi! As promised, a couple of piccies of LO. The pic of her in the bath was AFTER her surgery and you can't even see her scar 
xx
xx
M
Miss406
Guest
Hi there
I'm also in the UK and my daughter also was born with Tetralogy of Fallot.
The only difference is: She was born at home and until she was 5 months of age: no one knew.
If you have any questions you want to ask, feel free.
I made an educational video about the condition and it's on Youtube - it's that good, I've had medical students congratulate me on the good job I made of it.
I wish you both the very best of luck, we're all here for you. x
IF you look at my youtube you'll see my daughters journey through it all, Part 1, Diagnosis. Part 2, surgery and part 3 her first birthday, they are incredibly emotional videos - so only watch if you're feeling strong, it's always an emotional time, your daughter will be fine, I of course, can't guarantee it (wish I could) but the medical advances mean that once these children were expected to pass away basically from suffocation, can now have surgery and live totally normal lives. xx
I'm also in the UK and my daughter also was born with Tetralogy of Fallot.
The only difference is: She was born at home and until she was 5 months of age: no one knew.
If you have any questions you want to ask, feel free.
I made an educational video about the condition and it's on Youtube - it's that good, I've had medical students congratulate me on the good job I made of it.
I wish you both the very best of luck, we're all here for you. x
IF you look at my youtube you'll see my daughters journey through it all, Part 1, Diagnosis. Part 2, surgery and part 3 her first birthday, they are incredibly emotional videos - so only watch if you're feeling strong, it's always an emotional time, your daughter will be fine, I of course, can't guarantee it (wish I could) but the medical advances mean that once these children were expected to pass away basically from suffocation, can now have surgery and live totally normal lives. xx
TMonster
Well-Known Member
- Joined
- Oct 31, 2012
- Messages
- 2,129
- Reaction score
- 1
I'll look for the youtube videos. I've watched quite a few already.
I met with the surgeon. He was extremely rushed which kind of upset me because I had a lot of questions but he said he had a patient ready for surgery and had to prepare.
He said he tries to do the full repair right away if he can rather than a shunt and then a repair but it depends on how well she is doing when she is born. The biggest complication seems to be the pulmonary atresia. I am trying to do more research on this procedure https://www.ncbi.nlm.nih.gov/pubmed/11393109 but my surgeon was too busy to discuss anything with me. If any of you know more about it I would love to know about the possibilities.
Also, for those who knew about it beforehand, how did you prepare yourselves emotionally for the hospital stay? What types of things did you do with the baby in the hospital?
I met with the surgeon. He was extremely rushed which kind of upset me because I had a lot of questions but he said he had a patient ready for surgery and had to prepare.
He said he tries to do the full repair right away if he can rather than a shunt and then a repair but it depends on how well she is doing when she is born. The biggest complication seems to be the pulmonary atresia. I am trying to do more research on this procedure https://www.ncbi.nlm.nih.gov/pubmed/11393109 but my surgeon was too busy to discuss anything with me. If any of you know more about it I would love to know about the possibilities.
Also, for those who knew about it beforehand, how did you prepare yourselves emotionally for the hospital stay? What types of things did you do with the baby in the hospital?
M
Miss406
Guest
My daughter also had the full repair, it is with my understanding they only perform the BT shunt if the ToF is extremely bad and as a 'stop gap'
How soon after being born will he want to operate on her?
In the UK, they showed us pictures of other babies in PICU, wired up, monitors etc - and that was to 'prepare us'
But, truth be told (trying not to scare you now) when your baby comes back from theatre, nothing, no amount of pictures of videos can prepare you for that, sure you can see what she will look like, but until it's your baby lying there, so helpless, depending on life support - it really hits you hard.
As you've seen from my videos, it's one hell of an emotional ride, but we're all here for you. Big hugs xx
TMonster
Well-Known Member
- Joined
- Oct 31, 2012
- Messages
- 2,129
- Reaction score
- 1
She has pulmonary atresia so there will need to be a procedure done right away either the shunt or the complete repair depending on how big she is. The surgeon said he isnt a fan of palliative procedures and if possible will try to do the full repair shortly after she is born but the final determination will obviously have to wait until after she is born and her final echo. I don't know if his aggressive approach is better or worse. Part of me thinks its better but part of me is also very scared. The surgeon, however, seems extremely confident.
I am scheduled to tour the NICU on July 9th after my next fetal echo appointment. I just don't know how I am supposed to go through the next 17.5 weeks like this and then once she gets here deal with her being taken from me and then see her connected to all those tubes.
DH is trying to make it easier on me saying its just a small blip and that she will be off to a rough start but have a great life... its just so hard for me to see that right now.
My hormones are clearly in overdrive because I cry at the drop of a hat. I feel her kicking and moving inside of me and I tell her how much I love her and I just don't want to ever let her go.
I am scheduled to tour the NICU on July 9th after my next fetal echo appointment. I just don't know how I am supposed to go through the next 17.5 weeks like this and then once she gets here deal with her being taken from me and then see her connected to all those tubes.
DH is trying to make it easier on me saying its just a small blip and that she will be off to a rough start but have a great life... its just so hard for me to see that right now.
My hormones are clearly in overdrive because I cry at the drop of a hat. I feel her kicking and moving inside of me and I tell her how much I love her and I just don't want to ever let her go.
vermeil
Mom to 27 week wonder+DD
- Joined
- Oct 22, 2009
- Messages
- 1,488
- Reaction score
- 0
aww *big hugs* she will be fine, please try to not to stress too much. She`ll be in good hands and it sounds like you`re being monitored closely.
My first son was a micro preemie and I remember looking at pictures helps - you can follow the link in my sig for pictures. The nicu is scary and overwhelming at first but really, the nurses will explain everything to you and pretty soon you won`t even see the equipment any longer.
Basic equipment post surgery is
-temp monitor - typically a sticker (was shaped like a heart for us)
-IV
-mask to help breathing if required
-heartrate and breathing monitoring - 2 or 3 stickers on the chest
-possible nosetube for feeding - this is easily removed and re-added by the nurses
-saturation monitor - basically a little clip on the foot, with a little red light. It just measures O2 contents of the blood with a light, it`s harmless
please try to take good care of yourself
My first son was a micro preemie and I remember looking at pictures helps - you can follow the link in my sig for pictures. The nicu is scary and overwhelming at first but really, the nurses will explain everything to you and pretty soon you won`t even see the equipment any longer.
Basic equipment post surgery is
-temp monitor - typically a sticker (was shaped like a heart for us)
-IV
-mask to help breathing if required
-heartrate and breathing monitoring - 2 or 3 stickers on the chest
-possible nosetube for feeding - this is easily removed and re-added by the nurses
-saturation monitor - basically a little clip on the foot, with a little red light. It just measures O2 contents of the blood with a light, it`s harmless
please try to take good care of yourself
