[tweetybirdus]

We've been approached with a potential situation where the baby was born with Tetrology of Fallot, which is a heart defect. We don't know how severe it is. The only thing that we know is that baby seems to be doing well at the moment and may be discharged from Children's Hospital this weekend.

Has anyone had any experience with this condition? Or know of anyone who has?

TIA
Kat

[pwheatle]

I know of two children who had the same condition and once they were repaired there was no further cardiac issues.
Good luck!

Tricia

[nixe1597]

Hello,

I am a pediatric ICU nurse and worked several years on a ICU for babies with heart deseases like this.
I can tell you that Fallotsche Tetralogy is not a little easy desease. In the beginning the babies doing fine, but then they get really sick. And they need many many surgeries. Sometimes you have to decide if you give them surgeries or a new heart.
You can't really say how many at the end doing fine and how many doing bad-- but one thing you can say for sure: that they are sick their whole life. If it is because of a transplant or several surgeries they have to go through for a long long time.

If you are aware about that you will have a very sick child then do not hesitate to get more informations. It is not like they have symptoms all the time. They can have a happy life. The best thing is to talk to the doctor about that.

I wish you the best with your decision,

Nixe

[LoveBeingaMom]

I don't have experience with this condition. I would defer to Nixe's professional experience. But I want to add that if you research the illness (google is awesome), if your insurance will cover the costs involved and you in any way think you could handle it, you will love this child as much and have just as much joy as you would with a "perfectly" healthy child.

My son does not have this condition and I have no way of comparing him with this baby (and my son may grow out of his issues) but he has been in and out of the hospital and has chronic lung issues that require daily breathing treatments, many repeat infections of all sorts and special concerns that go along with this (ex., for the first 7 months of his life after his first hospitalization we were instructed not to take him ANYWHERE public, not the grocery store, not even church). I never expected to have this type of life but it perfectly suits us, busy, stressful but joyful. My son is not phased by any of his issues and is quite a crack up through it all. It is clear that he was meant to be ours and we were meant to be his. Of course, it is difficult to see them in pain and witness all the procedures. And it is not easy.

So, my point, don't be scared if you think this might be your child. But don't feel bad or guilty if you decide this is more than you can handle. Everyone is different and there is nothing wrong with deciding that this is too much for you. The right child is out there fore you.

[snaps]

As a Physician Assistant, I agree with Nixe. Tetrology of Fallot is a serious problem and can lead to a lot of surgeries, etc. Kids may turn out fine, but you need to do some serious research on this and talk to the doctors so that you can make an informed decision. Good luck. I know situations like this are tough to decide.

[boysmom324]

Congratulations on your potential match! So exciting!

I'm a baby doctor and have seen many babies with Tetralogy of Fallot. The only way you can make a decision from a medical standpoint is to find out how severe it is and discuss it with a pediatrician or pediatric cardiologist (which is what I would do). If the baby is already born and is being discharged without having had any surgeries, you are in potentially better situation, but again, you need more information. The natural course of untreated TOF is heart failure. The baby will need to have heart surgery at some point, that much is certain.

I wish you luck and am sending many hugs your way.
Christina

[bdunkadunk]

We have friend who's brother (age 32) has this. He has had two major surgeries, once as a baby and one recently. He is a working dad with two healthy kids and seems to be doing great.

[tweetybirdus]

We've decided to allow our profile to be shown to birthmother. I say birthmother because TPR has been signed. So, we'll see what happens, maybe next week sometime. Baby seems to be doing well. Doc suggests surgery in mid-Nov. and says there are possibilities of future surgeries but not necessarily. It seems as if her condition is milder than most.

Thanks for the support.

Kat

[LoveBeingaMom]

GOOD LUCK, Tweetybirdus!!!!!

I am so excited for you now that you've made your decision. I hope you have many months of sleepless nights soon. :-)

[loveajax]

Kat, good luck. I am so glad to hear the baby is doing well also.

[boysmom324]

Congratulations on your potential match! So glad to hear the baby is doing well! Best of luck to you!!

[tweetybirdus]

We got a call from the agency today. Birthmom wants to meet with us, only us. She isn't meeting any other families. The meeting is scheduled for Wednesday. I'll update afterwards.

[devildogwife]

Wow~good luck!

[tweetybirdus]

I think the meeting went really well. We had a lot in common with the birthparents. So, hopefully, we'll hear something soon. I'm really too tired to say much else, been up since 4:30 and really didn't sleep to begin with anyway. I'll let you know what happens.

Kat

[tweetybirdus]

I'm a mom. We get to pick up our girl on Monday. We just found out yesterday. So exciting. I got the interim care family's phone number and plan to call them later. We've got so much to do to prepare. We've done a little shopping, but still need a few things.

Thanks for all the support. I'll try to post pics next week sometime, not quite sure how to do about it.

Kat