Tiny little heart patient!

[weekycat]

Hi all,

I just found out that my yet-to-be-born niece, (due in June), has heart defects and will need open-heart surgery sometime in her first year of life.

She has something called "Tetralogy of Fallot. I've just been reading up on it. I guess she has a hole in the wall between the right and left ventricles, which causes the blue blood to mix with the red blood, and causes blue-baby syndrome. That's only part of it, there are other defects involved with "TOF" too.

I can't quite imagine a little tiny one going through what most of us have been through! Please say a prayer for my little niece!

 

[hensylee]

Don't know if you recall, but I requested prayers for a baby with the same problem awhile back. My cousin's grandbaby (one of twins) had the same surgery when she was 3 days old. She's several months old now and doing great. Just like her twin. So, please have faith that all will be well.

 

[McCln]

They have done miracles in the past 30 years alone. I saw a little one, at least age 3, with many heart probems. She passed on because they did not know much even then. But now they can do things before the baby is born. Your niece is blessed to be born in such miraculous times. She will be fine. She is so luck to have such a caring Aunt. You take care and we will be praying for her.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[weekycat]

Thanks hensylee!

Thanks hensylee!

Yes, I do recall the post, I didn't remember if it was the same problem though. I'll have to do a search now. It's great to hear that that little one is doing fine! Unfortunately that may not be this little one's only problem, the ultrasound that was done today, was mainly done to see if the baby had Down's syndrome.

My sister is 42, and the baby was found to have one of the indicators earlier. I guess everything looked great today, until they found the heart problems. They don't know if she necessarily has down's, but she could have some type of chromasonal disorder.

I will pass on your good news to my sister, it might give her some much needed encouragement right now!

 

[FredH]

Heart repair on Baby

Heart repair on Baby

I read and saw on TV where they can repair that condition without open heart surgery. They go in with a catheter and actually glue a plug in the whole. Does anyone else know about this procedure? I think they did it at San Diego Children?s Hospital. Hope you can find out about this I will check on the internet and see if I can find out more.

Bye

Fred

 

[Scottie]

Hi Weekycat

Hi Weekycat

I am sorry to hear about your niece ..I was born in 1960 with ToF when the prognosis was not good and look at me ..still around in 2003.They can do marvels with heart surgery on small babies nowadays which was not available in the 60s ....I hope the Mum continues to keep well and does not worry too much ...Take care
Scottie

 

[terry40]

weekycat

weekycat

Thought and prayers are being sent their way,

Keeps us updated,

Terry40

 

[weekycat]

Thanks everyone!

Thanks everyone!

Fred, I'm pretty sure the cardiologist she talked to told my sister it would be open-heart.

The hole in the heart is only one part of ToF, there are actually 4 different abnormalities that make up ToF. They are: Ventrical Septal Defect, (the hole in the septum), Hypertrophy, (enlargement of the right ventricle), Pulmonary Stenosis, (narrowing of the pulmonary valve), and Displaced or Deviated Aorta, ( the aorta is not in the right plac

Scottie, I'm so glad that you're still around in 2003! Was your valve surgery related to the ToF? I'm assuming you had some sort of surgery as a child, right? I'll try to reassure my sis, but yes, she is quite the worrier. And now she wants to get her own heart checked out, what with all this, and me having MVP. She's also been told she has a murmur, so it's not a bad idea.

Thank you all for the prayers, and I'll keep you updated!

 

[Scottie]

Hi again Weekycat

Hi again Weekycat

Yes my surgery was related to my Tof ...It was surgery #4 ..or 5 if you count the small one I had as a baby to keep me alive ....the Dr did say that they thought it was a family thing as my mother lost siblings with heart problems as children ...but my two sisters are fine and my own three children have been checked out and are fine so far ..thank God!
Your niece will probably not need as many surgeries as I have had ...but because they were still finding their way with heart surgery in the 60s and 70s it has meant that they have had to go back in ...today probably one surgery will fix it ....it is a bummer when you realise that it follows you for a lifetime ...but those the breaks I guess ...Hospital for kids is so much better today than the 60s when some of the things they did would come under child abuse today ....
I hope things go okay ...just holler if you have any questions ...I may be able to answer them ....the one thing I would say to your sister is as your niece gets older to keep her informed of her condition herself ....my parents were advised to keep it all from me ...so I grew up afraid and ignorant as an adult of my own condition...
Take care
Scottie

 

[vlamus]

Weekycat,

Sorry to hear about your soon to be born neice. As Scottie already mentioned, and I can attest to, there are many of us that had ToF as babies. AKA blue babies, most of us were repaired in our early years and have led normal lives. Nearly 40 years to the date of my repair in 63' (I'm 47 now) I will be having my pulmonary valve replaced next week. Before that time, I did quite well without any restrictions. Tell your sis to hang in there because they have made great strides with that particular defect and the outcomes are amazing! vlamus

 

[Ross]

vlamus, when next week? I never got to answer in your first post, sorry. Is this still going to happen at Mayo?

 

[vlamus]

Ross,
Yes, I'm heading to Mayo. I'll have tests, including cath, then surgery on Thurs if all the tests still indicate that a PVR is what's needed. Guess the cath could say otherwise, but I don't think the ECHO would lie that much. I'm hanging in there. I was a mess for the last couple weeks, but it is strange that a sense of calm has come over me and I just want to get this taken care of. Us "blue babies" are a tough lot.

 

[Scottie]

Darn right we are Vlamus!

Darn right we are Vlamus!

We are tough ...I'll be thinking of you...us blue babies have to stick together ...let us know how things go ....be strong!
Take care
Scottie

 

[Ms. Ramsey]

Little heart patient

Little heart patient

I feel so bad about your neice. I, too, will be hoping for the best for her - and your whole family.

Mary Ramsey

 

[pegne]

prayers for cyber friend with TOF

prayers for cyber friend with TOF

I have a new cyber friend who will be undergoing her 5th heart surgery TODAY because of TOF. She is only 42. I told her about VR but I guess she didn't join. I told her that with her experience she could help a lot of people. She did say Weeky could e-mail her with any concerns about her neice. I would like to ask for prayers in her behalf. To go through so much in such a short time is such a shame. Her name is Catie. Thanks all

 

[weekycat]

I will add your friend Catie to my list

I will add your friend Catie to my list

of people to pray for. Hopefully, she will join us when she feels up to it, after the surgery. I found this site just 2 days before my surgery, and it was a tremendous help during recovery.


Thanks, Pegne. I did receive your email and hadn't gotten back to you yet, but since the baby won't be born until June, there's really nothing we can do about anything right now except pray.

We do know she has the heart problems, but not the extent of any other possible genetic problems. She may have Down's syndrome or some other genetic disorder. I'll keep you updated.

 

[pegne]

cyber friend

cyber friend

I received an e-mail from my friend who underwent her 5th heart surgery last Thurs. She is doing remarkably well and is home as of yesterday.