My questions are: Does anyone know what they are realistically facing (diagnosis ACC/22weeks gestation/baby girl/amnio genetically normal)? How will they know how severe or mild this will be? They are trying to decide if this would affect quality of life so much that they should consider terminating the pregnancy, is this something that someone else considered and now is thankful they did not do?
Dear Concerned Aunt:
When pregnant with my son, I was so afraid of a heart defect (midline
problems run in my family) I went to an extremely well-known
Perinatologist. We had all sorts of tests, ultrasounds, amnio’s, if
it was a test to detect something wrong I had it. At that time in my
life I would not have carried through with the pregnancy (I hope I do
not offend anyone). I grew up with a sister with a heart defect and
felt like I had already lived the special needs movie. Nothing came
up, except I was sick the entire pregnancy. My son, Alex was
diagnosed at 6 weeks with c-acc after having seizures. We went back
to the delivery doc and looked at the film and yep, he could see the
problem. I was incredibly lucky not to have found out during
pregnancy. I do not envy anyone who has to make such a decision.
I cannot express how thankful I am to have Alex as my son. I must be
honest and say it has been hard, sometimes really hard, but I don’t
know a good parent that doesn’t think raising a child is a challenge.
For me there have been tears, fears, forgotten milestones, anger,
resentment, and without a doubt the best moments of my life. I am
just now beginning to realize what a wonderful individual he is.
My only real advice is support your siblings choice. Early
intervention is important. The path of every child born with a
disorder of the Corpus Callosum is unique, just a bit more unique
that other kids.
I could give you a list of all the great things about having a child
with A-CC but that is something everyone gets to discover on their
own. I hate to spoil a good book by spilling the ending.
Good luck and many blessings to your family.
Sincerely,
Julie Ann Rogers, mum to Alex, 12, c-acc
Dear Concerned Aunt–
I am about 18 months removed from where your relative is. Great pregnanacy no problems until about 30 weeks when they saw enlarged ventricles on a sono. Perinatologist ordered an MRI–which gave us the diagnosis of C-ACC w/ associated colpocephaly at @ 33 wks gestation. We were later in the pregnancy at this point but would have never considered terminating. There is a reason for eveything and we were doing/handling/ accepting what was meant to be.
We were/have been given the “wait and see” lecture several times by several doctors and that has been the hardest part to deal with to date. My son is 13 months old now and doing great!! (Thank God)-- We have no other issues and no associated syndromes. Genetic test came back normal. This affects everyone so differently-- there is no way to tell how mild or severe any indiviudal will be --so only time will tell. We have been been blessed --and we are still early in the game. My son is a happy and fulfilled little boy. He is our miracle baby and with God’s help we will make it through this journey. It won’t be easy but then again is it ever easy for anyone?
I’ll keep your family in my thoughts and prayers - I so understand what they are going through.
Concerned Aunt,
though I never considered termination (my son was not diagnosed until it was
far too late and I would not have made that choice anyway), I was told my
son may never walk, talk, sit up or anything when he was 5 weeks old. As I
type this he is dancing and singing the theme to Elmo’s World so clearly, noone
knows for sure. My son is happy, meets milestones and is totally beautiful
to look at (we were told he could have disfigurements due to midline shifts and
such. He is a blessing to us and I love being his mom every day (ok…so
there were some days during the “terrible twos” that weren’t so fun, but
normal!!)
Good luck to your sister and family.
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Julie,
Just wanted to let you know I finished reading your e-mail and thought, "Wow. Well said. " I’m so glad you have your Alex. I have felt the same way you have so many times. You sound like a wonderful mother. Alex is just as lucky to have you as you are to have him. I couldn’t agree more that there are so many degrees of ACC. I just had no idea until I found this forum. I don’t know if I was just extremely sheltered or if there is just so much more information available than there was 21 years ago when we had our Cory, but I’m glad to be learning new things at any point.
Lisa
mom to Cory, 21 years
Alexsmum agenesiscc-cpt5209@lists.careplace.com wrote:
Thank you so much for your concern and support.
My heart just aches for my brother and his wife, they are really struggling
with this but the MRI showed that the situation is even more grim than what
they had thought yesterday. Saddly, earlier today they made the difficult
decision to terminate the pregnancy sometime in the next few days. While
genetically and physically this is a totally normal and healthy baby they
are scared for what might result given the MRI results and the research they
have done.
Best wishes, please continue to support others in need. Yours was a very
warm and positive email during a VERY difficult time.
-----Original Message-----
From: Mom to 3 [mailto:agenesiscc-cpt5209@lists.careplace.com]
Sent: Thursday, July 12, 2007 10:06 AM
To: britt4@bellsouth.net
Subject: Re: [agenesiscc] ACC diagnosis
Thank you so much for your concern and support.
My heart just aches for my brother and his wife, they are really struggling
with this but the MRI showed that the situation is even more grim than what
they had thought yesterday. Saddly, earlier today they made the difficult
decision to terminate the pregnancy sometime in the next few days. While
genetically and physically this is a totally normal and healthy baby they
are scared for what might result given the MRI results and the research they
have done.
As a nurse, a christian, and a loving sister, I had hoped that my efforts to
find more information and positive outcomes would help them choose to
continue with the pregnancy but this was not the case.
Best wishes, please continue to support others in need. Yours was a very
warm and positive email during a VERY difficult time.
-----Original Message-----
From: Hope4my [mailto:agenesiscc-cpt5209@lists.careplace.com]
Sent: Thursday, July 12, 2007 10:57 AM
To: britt4@bellsouth.net
Subject: Re: [agenesiscc] ACC diagnosis
Thank you so much for your concern and support.
My heart just aches for my brother and his wife, they are really struggling
with this but the MRI showed that the situation is even more grim than what
they had thought yesterday. Saddly, earlier today they made the difficult
decision to terminate the pregnancy sometime in the next few days. While
genetically and physically this is a totally normal and healthy baby they
are scared for what might result given the MRI results and the research they
have done.
Best wishes, please continue to support others in need. Yours was a very
warm and positive email during a VERY difficult time.
-----Original Message-----
From: lisa1013 [mailto:agenesiscc-cpt5209@lists.careplace.com]
Sent: Thursday, July 12, 2007 12:07 PM
To: britt4@bellsouth.net
Subject: Re: [agenesiscc] ACC diagnosis