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  #1  
December 12th, 2008, 06:02 AM
Veteran
Join Date: Aug 2006
Location: Sydney
Posts: 135
Hi all

I have a son, Daniel, who is 15 months old now and was born with pulmonary atresia, a VSD and MAPCAS. He had surgery twice this year to fix the MAPCAs in the left and right sides of the heart, and a "full repair" is planned for next year. He also has 22q deletion.

The last surgery was about 6 weeks ago. It seems like a long time ago but he is still recovering. He used to be this chubby baby who would eat anything, but those days are long gone. He has never recovered the weight he lost and we struggle every day to get him to eat enough food. He also used to sleep through the night....and now, well, he doesn't.

But, never mind, those are "small" frustrations. The bigger picture, the stuff that really matters, is that he is ok, his heart is doing its job, the operations achieved what they were meant to achieve and - better still - we don't have to face surgery again for several months! (Fingers crossed!!!)

I have found the experience of having a child with a chronic illness very difficult and isolating. It is hard for people with healthy children to understand what is like to have a child that needs so much medical intervention to survive. When telling the story to people I don't know well, I always get either too much sympathy (which prompts me to be very reassuring - "no, he is fine, really") or a complete lack of understanding (like the people who compare their children's colds with your kid's last ICU stay!). And I guess it is hard for me to understand them because, in all honesty, I don't know what is like to be the parent of a healthy child (it makes me rather jealous too).

Anyway, best wishes to all. Looking forward to meeting you.

Take care

Paula
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  #2  
December 12th, 2008, 05:43 PM
Super Mommy
Join Date: Mar 2008
Posts: 555
Hi Paula,

I am Jennifer. My son is Jack. He has a VSD. We have had/still have major feeding problems and growth restrictions. I find the feeding problems to be a huge stressor, especially when I watch other babies "just eat". We are up to about 15 ozs now, on a good day! I basically have to trick Jack into every ounce. It's a full day project, every day. Jack is 5 months now. He is being medically managed while they see if they will operate. I have a problem with the jealousy too. How could we not??? And the stress and anxiety, I am working really hard on. I hope you enjoy this board. It is a relief to have mommies going through the same "not perfect" baby experiences. glad you found us!!!

Could you tell me more about 22 q deletion and MAPCAS? I am not that familiar with these.

Best,
Jennifer
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  #3  
December 12th, 2008, 07:54 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Welcome Paula! I'm Stacy & I have two sons, Andrew 2.5 years & Luke 6.5 months. Luke was born with a VSD & Trisomy 21 (Down syndrome). He had OHS on 9/11/08 to repair his VSD & they also repaired an ASD & PFO.

This board had been very helpful to me & everything I have been through with Luke. ((HUGS)) to you.
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  #4  
December 15th, 2008, 02:57 PM
MellieB's Avatar Platinum Supermommy
Join Date: Nov 2005
Location: Melbourne, Aust.
Posts: 64,110
Welcome. I'm Mellie. My son Zachary had TA with TGA, a VSD and hypoplastic aortic arch. Post-op he also needed a permanent pacemaker put in.
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