Birth Defect Support Group

[PandoraHealer]

I myself have a baby with a heart defect and various other problems.

She has Hypoplastic Left Heart Syndrome, (no left ventricle), a brain tumor- Ganglioglioma that goes from 2 cm. in her brain cavity down through her orbit, ear canal, and down past her jaw.
She also has hydroneuprosis of her kidneys.

I know how hard it is to go through a child with a birth defect and was thinking a support group would be wonderful- We can update on surgeries, current happenings, frustrations with doctors (ugh- dont get me started), things like that.

BB-PH

[TheWomanMonster]

:hugz:

I'm not a mummy yet myself, but I've gone through a lot of this sort of stuff with my family. I've always admired the strength these kids have.
I think this group is a really lovely idea, PH.

Bless.

[DreamSpell333]

We lost our 2nd child, Olivia to a neural tube defect . Anencephaly last febuary.

I belong to a couple yahoo support groups as well. It would be great to have one here.

:hugz:

[Athena-Nadine]

Stuck! :)

[moonchild]

Sage was born with a VSD (ventricular septal defect) heart defect (she had a hole between the bottom 2 chambers of her heart) and she was diagnosed with a germ cell tumor, teratoma, at age 8 months. we are 9 months post chemo with positive results. She has been cleared but we are still monitoring every 6 months with CT's and 3 months with bloodwork. We are also monitoring with Urology (don't get me started with them) because the tumor was at the base of her tailbone and put pressure on her bladder and nerves to her right leg. at 20 months she finally walked and is just about running now!!!

[PandoraHealer]

wow- I'm glad this is already having a positive response. We've got our 2nd open heart surgery on July 30th- just a few weeks!!! we're scared to death but glad that it'll be over with soon- we'll have a brain surgery when she's 9-12 months old- between oct and dec. depending on how this surgery goes.

wish us luck.

BB-PH

[TheWomanMonster]

Lots of luck and love PH. :hugz:

Go little one go!

[moonchild]

good luck, will be thinking of you in the coming weeks!

[DreamSpell333]

Good Luck!! :)

[WillowsMuse]

Best, best wishes, PH and sweet baby girl. :hugz:

[KaidaMidnight]

Good luck Pandora! She's a fighter alright. :) Your in my thoughts!

[Gryph]

Hi Pandora,

My older son was born with a heart defect also, Tetralogy of Fallot. He had surgery when he was 2 months old to repair it, and last month, he turned 13. Unfortunately, he may have more surgery in his future, a valve replacement. He's also mildly autistic, which while not a "birth defect" per se, is certainly a chronic thing we have to cope with.

When we were in the cardiac ward at Children's Hospital in Boston, we saw a number of kids with hypoplastic left heart, at various points in repair. One little boy about 3 years old was in for his fourth surgery, and he was doing really well.

I'll be thinking and praying for your daughter as her next surgery comes up.

[PandoraHealer]

Thank you all- its a comfort to know that we're not alone in all this. We've been at the childrens hosp. in Oklahoma City- its newly remodeled and wonderful.
thank you for your prayers.
BB-PH

[DreamSpell333]

pandorahealer..

i was just wondering how you and your daughter were doing? :)

[PandoraHealer]

pandorahealer..

i was just wondering how you and your daughter were doing? :)


hey- i must have just totally missed this in december.

We're doing pretty good, just haging out- which is a refreshing change. its been pretty slow, quiet... she's turned into a bit of a drama queen so thats a bit annoying. On the health side of things-- she turned 1 on dec. 13th and just a few days ago she weighed 19 lbs (finally)

doing good- hope you guys are too!

ph