Hi! Looking for other moms of CHD children

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tantekay

Hi! I'm the mom of Eric who was born with single ventricle (left), ASD, VSD, L-transposition, and ventricle inversion. He's had a modified Norwood, and a Glenn, we're waiting on a Fontan. He's got added complications of SVT's and AI. The AI is very mild, but we're watching. I found this site through another site and I can tell you I've learned more tonight-- it's great to have such wonderful support out there. Anyway, I was looking for moms of children with CHD's -- or anyone -- it seems that sometimes I have so many questions and having others with the same experiencies is such a help. Thanks to all out there who have helped me already!!!!
 
Hi Tantekay, im Paula my son was born with AVSD, he had OHS at 18 months, he is now 7 and waiting for his mitral valve replaced. We will find out when on novemer 25th. How old is Eric?.You have found a great site :) , lots of wonderful people, will help you out with any worrys you have. I have found out loads of information, i can use when i need to. There are other mums around who will be able to help you. Paula x
 
Hi Paula! Thanks for answering. Eric is 2 1/2 years old -- he's had surgeries at 4 weeks and 5 mos. So it's been a while since we've been at surgery -- not looking forward to going again - I know this one will be tougher because he's older and will know more of what's going on. I hope your little one is doing well. Eric goes back in Dec. for his yearly echo to check the aortic valve and whether it's gotten worse or staying the same
 
welcome

welcome

Hi, my son Justin is 17 and was born w/ TGA, vsd.pulm atresia and a few little things, he just had his 4th OHS in May and is doing well.there are a few chd moms that post here, but I also belong to a couple online groups just for CHDs if you want the links feel free to email me. [email protected] we live in NJ and just has had surgeries at dupont in Del and CHOP (philly)where do you live? One thing I would recomend is setting up either a care page or caringbridge page for Eric, it makes it so much easier to give updates especially when you are in the hospital and can just do one quick update onlineinstead of having to try and make alot os phone calls, Justins page is caringbridge but they are both free and pretty easy, or if you have carepage let us know and as other parents ask people to say a prayer for Eric you won't believe how may people you meet going thru the same things that sign your page :eek:) well, If there is anything I can do please just ask, Justin was 10 before there were any support groups for CHDs so I know how scarey and alone you can feel, that is part of the reson i try to stay active even when he is doing great and I think sometimes it helps the newer parents to hear about kids like Justin who are older and do so well, Lyn www.caringbridge.org/nj/justinw
 
I'm not a parent, but I am a patient. I was born with complex CHD (see my sig) and have made it to the "ripe old age" of 28. As Lyn said, there are some wonderful groups for parents available, as well as groups for adults with CHD. This site is wonderful in that its a mixture of everyone! Which can be helpful for getting multiple perspectives. If you have any questions for an adult who went through surgeries and other issues as a kid, feel free to contact me...

Good luck,
 
Hi Lyn -- just checking in - we live in VA -- Eric's surgeries have been at UVA thanks for all the advise -- As soon as I get a few minutes longer -- I plan to set up a carepage or something -- I know that would be a big help -- "little E" as we call him has been on prayer chains across the USA - and having a lot of out of town family -- it would be a big help. Thanks again -- I looked at Justins page - really neat -- I need more time to sit and read everything. Hope all continues to go well.
 
Iam also quite worried this time around because Curtis will be aware of what is going on. When he was a baby he screamed the hospital down, every time someone touched him, so i thought it would be easier when he was older but im not so sure, now its getting nearer. Thanks to Lynlw, Curtis now as a carring bridge page. I dont know how to set up a link like Lynlw, but if you would like to have a look, it is www.caringbridge.com and type in paulabrown in the top box.
 
Thanks Lyn, im not that clever on computers but ill give it ago. Thanks again :)
 
Hi Paula! I looked at Curtis' page -- I like it -- I tried to sign the guestbook but it wouldn't post -- I'll try again later. But please let him know I liked his page and wish him well -- He's such a brave boy -- any child having open heart surgery is brave to me!!! Hopefully I'll have a page for Eric up soon. Best of luck -- keep us posted on Curtis' surgery. Eric obviously did well on the first 2 surgeries -- he was so young -- then went through a phase where he'd scream and pitch fits over a stethoscope on his chest -- now he does wonderful -- sit's still for everything -- EKG's and all -- I just want him to not go into surgery screaming and wondering why mommy can't come. But we have until approx. July of next year unless the need arises to have it done earlier. Thanks again and I'll try to sign Curtis' guestbook again later.
 
me again everyone! I have a carepage up for Eric - if you wish -- go to http://www.carepages.com and his page name is littleEszipperstory. There's not much there yet, but it's a start. Also, thanks to knightfan -- I'll be visiting there!
 
Hi, TK!

Hi, TK!

Welcome to this fabulous group! My daughter Katie is four and just went through the fontan and a valve repair, then replacement (yes! two surgeries in one very long day!) on July 12th. We had a tough go of it for a while, but she is now doing great! We just got a sat reading of 99 at her last checkup! :eek: Highest for us ever. 92 at birth and spiraled down steadily since, even with the BT shunt and bilateral bidirectional glenn surgeries. Katie shares the L-transposition with Eric. To my understanding the L-transposition of TGA is the same as ventricular inversion. Katie's ventricles are indeed flip-flopped. Instead of the ASD & VSD, Katie has the complete atrioventricular septal defect............well, and a few others thrown in for good measure. It's good to hear that Eric is doing so well, and the fontan can wait for a while longer.

Like Lyn and Cort said, there are some other great pediatric heart groups out there if you are looking for more fontan type parents. Let me know if you think you are interested, and www.tchin.org is a great place to start, btw. I think my Katie is the only member on here who has undergone that particular procedure. Not to push you away from this group at all. I cannot speak highly enough of the members on here who are so compassionate and so supportive.

I stumbled upon this group last year when I found out one month post-op that Katie's repair of her common AV valve went south and was not holding up. I was terrified of mechanical valves and coumadin and what our future might hold. This terrific group of people did their best to allay my fears and reassure me that it was not the end of our world as we knew it. With their steadfast and unwavering support - and I do mean support - we broke a record on here :eek: and one member GeeBee even drove four hours to come see us in the hospital - and their cheering and praying, we made it through. We were gone three weeks and six days, but we did it!

And ya know what? LIfe did NOT end as we knew it! Sure, it's a bit different, and we are a tad bit more careful, but we are not living in a bubble as I had once feared.

Oh, and don't worry about Eric crying and being awake when they haul him off to surgery. They usually give the kids a good shot of versed a little while before. So, they haul away a little drunken sailor who is feeling no pain..........just wish they would order one up for the parents as well.

Welcome again and ask any questions that you might have. Hugs. Janet
 
Hi Janet! Glad to hear that Katie is doin so well!! I know what it's like when you are watching those oxygen levels. Eric is still in the seventies. At birth he was runningin the low to mid 90's but of course -- surgery and the modified bt shunt took care of that -- they did tell us that they were looking for sats in the 70's and they had wanted him to stay there basically until he went for his Fontan. However, Eric has other ideas -- he continually has sats up around 80 when we go to the dr. office. Thanks for letting me know about the versed before surgery -- I think other than the surgery itself, them taking him back is what I fear most!! I remember when he was almost 5 mos. old and went in for his first cath -- they had us help wheel him into the cath lab before we left. Of course, they had also sedated him then and it was so pitiful yet cute to watch him try to cry when they started the IV -- in him mind you could tell he was screaming his head off but to watch him, it was all in slow motion. I'll check out the other site as well -- but you are right everyone here is so wonderful!! Thanks again and I'll be saying prayers for Katies continued improvement!!
 
M894 said:
Only me again, thanks for looking on Curt's page. I tried to have a look at Eric's but i couldn't get on to his page at all, think i need a password or maybe its just me? Paula x http://www.caringbridge.org/visit/paulabrown Cheers Lyn, again :)

Thanks for looking -- I do know you need to sign up and get a password on carepages.com -- but it's all free -- good luck!! and thanks again
 
tantekay,

You are welcome ... I hope the group helps you! Be sure to tell 'em I sent ya ;).
 
Another mom

Another mom

Hi Tantekay,
I am another mom of a L-TGA child. Andrew is 15 for another month at least- and has had his tricuspid valve replaced twice. He had a mechanical for almost 9 years and just recieved a bovine valve last June.

It has been quite an eventful summer for him as he was defribulated at school and then received an ICD just 7 weeks or so after his last surgery.

The group here is great and I am sure you will get to know a lot of friends that are full of good advice or just a cyber hug and some prayers. I will have to check out your carepage soon. Andrew has one as well at carepages.com and his pagename is andrewjosephspage. Don't ask me why I made it such a long name. :D
 
Hiya,
I'm mum to Chloe who'll be 6 at the end of this month and was born with a CHD called complete atrio ventricular septum defect. She's had 3 open hearts and a cath and now has an artificial mitral valve and takes warfarin.
I've been on and off of this group for about 3 years now but been back properly for about a year and a half i think and it really is excellent as the others have said - loads of support available to you!!
Look forward to getting to 'know' you!
Love Emma
xxx
 
cocoalab said:
Hi Tantekay,
I am another mom of a L-TGA child. Andrew is 15 for another month at least- and has had his tricuspid valve replaced twice. He had a mechanical for almost 9 years and just recieved a bovine valve last June.

It has been quite an eventful summer for him as he was defribulated at school and then received an ICD just 7 weeks or so after his last surgery.

The group here is great and I am sure you will get to know a lot of friends that are full of good advice or just a cyber hug and some prayers. I will have to check out your carepage soon. Andrew has one as well at carepages.com and his pagename is andrewjosephspage. Don't ask me why I made it such a long name. :D
Thanks - I'm definately going to check out Andrew's care page!! I find such inspiration from seeing other children who are doing well who have been through so much. Tell Andrew that my prayers are with him and Eric says hi! Best of luck and if you ever need a cyber hug or prayer, just let me know. Karen
 
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