OcalaMom.com

Hi I wanted to know if there were any moms here who have children with congenital heart defects?
My daughter Isabella is 2 years old and was born with some heart problems
and they did open heart surgery to fix them but now she's going to need surgery again ! and im so devestated and dont know what to do or how to handle this! I wanted to know if there were any other moms here who have been though the same thing and how they handle all the stress and seeing there kids like that ?

Hi Jesse, my daughter was born with Emanuel Syndrome which causes MANY birth defects. She had several ASD's. We narrowly avoided open heart surgery last year.

Makily has been in and out of the hospital and had many surgeries in her life. The stress of this is NEVER easy. I surround myself with friends and famild. Sometimes, I just sit and cry my eyes out, you have to get it out. Educating myself on my daughter's condition and any surgery she has usually helps me to. Walking into a situation blindly is never a good thing so I go into it knowing every complication that could happen and exactly how the surgery is done. Google has become my best friend LOLOL

If you need someone to talk to let me know. I am a good listener.

Here is a video I did last year of my daughter's heart cath.

Makily's heart - CLICK ME

I will be pryaing for Isabella and your family. Hang in there.

thank you so much ! my daughter she had a cath done last week on tuesday ! thats when we got the bad news ! it hit us like a punch in the face ! because everyone thought the problem would be fixed by the cath .

jessie girl, i don't have any advise as i never went though anything like this, but i want you to know your are in our prayers.

Which hospital are you going to for procedures?
They should be able to help set you up w/ an appropriate support group, too, if you're not already. What surgery does she need now?
I'm sorry you're going through this.

she goes to shands ! she going to need surgery to remove a muscle from her heart that is causing the pulmanary arterys to be narrow because of the pressure its putting on the heart.

I'm in clinicals up there and actually just stood in for hours and hours during my OR days on an open heart surgery a couple of weeks ago.
If you need anyone to chat w/, etc..., LMK when the surgery is scheduled b/c chances are I'll either be on campus (classes are right by Shands) or in one of the hospitals up there.

thank you !! i will let you know when her suregry day is !

My son was born with a bicuspid aortic valve and quickly developed aortic stenosis (a narrowing of the aortic valve). When he was three months old he had a cardiac catheterization/balloon valvoplasty of his aortic valve. He had the procedure one week before Christmas last year and the valve is doing great so far - you would never be able to tell he has a heart condition - he is a busy boy. We have a wonderful doctor at Shands, Dr. Joe Paolillo. I cannot say enough wonderful things about Dr. Joe and his team. The best advice I can give is to educate yourself on her condition and the surgery, ask lots of questions, and be your daughter's advocate in the hospital. Ask why people are coming in the room and what they are there for - stay on top of everything. Make sure EVERYONE washes or sanitizes their hands before touching your daughter for any reason - even if they are wearing gloves. You have to be your child's voice. Give yourself permission to be scared and lean on family and friends for support - everyone wants to help - don't be afraid to ask. You don't know love until you have a child, and you don't know fear until your child is sick. You and your daughter will be in my prayers.

Dr. paolillo is my daughters doctor too he is wonderful and her cardiologist is dr. saidi she's great !

to let you know what is going on with my daughter shes suppose to go into surgery in january the doctors think its best not to wait for time to pass !!! im so devistated !!

I'm sorry to hear that!!!
If you need anything, I actually will be at Shands starting in January for my peds rotation. PM me when you know the date if you want!
Have you been able to find any support groups to helk you w/ this?

no i havent the ones i have found no longer are available !! but thank you when i find out the date she goes in I will email you and let you know !