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Forum: Children with Special Needs


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September 6th, 2011, 08:37 PM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
Join Date: Mar 2011
Location: Los Angeles County, CA
Posts: 2,643
Hello Ladies!

Im Rheanna, expecting my 1st baby on January 1, 2012. Its a boy and his name will be Carson Nicholas. I post regularly in the Jan DDC but am really looking forward to getting to know you ladies as well.

Last Monday Aug 29th, we went in for a fetal echo, and two abnormalities were found on Carson's heart.

This is copied from a post I put on my DDC:

Well, there are two problems. One being Coarctation of the Aorta and Ventricular Septal Defect (VSD). He will have to have open heart surgery as a new born to correct both problems.

According to the paper work they gave me.....

Coarctation of the Arota: is a narrowing of the aorta. This means that the left ventricle has to work much harder than normal to push the blood through the narrowed area. Thus causing a "traffic jam" of blood.

Normal Heart:

Coarctation of the Arora:

With VSD there is a hole in the wall that divides the left and right ventricle. The right ventricle is supposed to hold the blood that had not yet been oxygenated, and the left ventricle holds the blood that comes from the lungs and is oxygenated. The hole in the wall means that the oxygenated blood and non-oxygenated blood is mixing.

According to the doctor and the genetics specialist these defects will not affect him while he is in the womb because I am breathing for him, Im just having a hard time knowing that my son will have to have open heart surgery.

I asked the doctor all the questions I could think of. There are two ways this happens, 1. its developmental or 2, it is genetics. If this is caused by genetics she said that could be other things wrong with him as far as mental retardation or things along that line. She gave me the option of getting an amino done to test if it is a genetic defects. She explained that it wouldnt change the outcome of this, it would just prepare us if there was any other abnormalities, so we declined it.

We will be meeting with a pediatric cardiologist and they will go over exactly what happens after the baby is born and all of that. All we know right now is that there is a big mountain in front of us but that there is a good chance of him making it.
__________________________________________________ _________________________

I am waiting to hear from the pediatric cardiologist office tomorrow as to when my appt will be. I will be meeting with a doctor from Los Angeles Childrens Hospital and I will be able to ask him whatever questions I want.

I am over the initial shock of the news and am kind of at peace with the news. I have faith that everything will be OK and know that for now its my job to take care of myself the best I can to help Carson be as health as possible when he is born.

Im just wondering if any of you ladies have any advice for me or have even been through something similar.

Thanks for baring with me. I cant wait to get to know all of you.
Carson Nicholas My heart HERO
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September 7th, 2011, 06:44 AM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
Hi!! I have two friends who's children have had open heart surgery as infants. (I think one was a VSD, not sure about the other). Both little girls are proud of their "zippers" (the scar left from the surgery).

Sorry to hear that you've gotten such tough news before he's even born, but thats great that you're doing so well, and like you say. There is a very good chance that he will be just fine (one of the girls is completely unaffected besides the heart problem, the other one does have a genetic condition, but it only causes mild physical abnormalities and GI issues). I would consider getting the bloodwork done at the same time as the surgery so that there is no extra trauma (needles and such) and that you can get the answers you may need to be prepared for what may be to come.

Welcome to the board!! I'm Alycia and my special daughter is Carrie, my other daughter is Katie. Carrie has undiagnosed delays (probably apraxic) and through my pregnancy they told me that Katie would be the same way. I know where you're coming from about being scared of whats to come even before you get to enjoy holding that tiny baby.

Keeps your hopes up. There are many many babies out there with similar conditions who are healthy happy kids. Both of the ones I know (for instance) play sports and are just regular children

Congrats on your upcoming bundle of boy!

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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September 7th, 2011, 11:31 AM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
Join Date: Mar 2011
Location: Los Angeles County, CA
Posts: 2,643
Thank You so much Alycia. The genetics specialist did say that they would test his blood once he was born to find out if its a genetics issue or not, and if it does turn out to be than Nick(SO) and I will both have our blood taken as well to see who the carrier is.

Regardless, I am so grateful to have found this board, thank you for the warm welcome.
Carson Nicholas My heart HERO
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September 7th, 2011, 11:43 AM
greenchild's Avatar Platinum Supermommy
Join Date: Jul 2006
Location: MN
Posts: 15,839
Welcome!!! I'm Anne, mama to Kaiden who has T21.

I hope everything goes smoothly with the heart surgery when Carson is born!! If there are developmental delays, let me tell you that diet is extremely important.
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September 7th, 2011, 03:00 PM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
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I'm sorry you're facing this, but so glad you know about it now so everyone is prepared. Ava had a small VSD which closed on it's own. She has a disease that is slowly causing cardiomyopathy.

Please KUP and I'll be praying! I know how helpless you feel. ((Hugs)) I have a few friends whose children have had OHS and they are doing great!

Thank you, tasha_mae, for my siggy!
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