Discussions By Condition: Medical Stories

son with cri-du-chat syndrome

Posted In: Medical Stories 3 Replies
  • Posted By: clauditaalvarado
  • January 25, 2008
  • 09:25 PM

hi, my name is claudia alvarado and i'm from ecuador (south america). i am a mother of a CDCS boy, his name is Tomás.

here is a bit of the story since he was born, he's 9 month now.

my boy was born april 24th 2007. everything went fine in the operation room but there was something wrong with my baby's crying. that's when his neonatologyst found out that something was wrong. he could bearly cry and couldn't eat. the hours passed and the pediatrician decided to call a neurologist to examine the baby.

after the examination he told us that the baby presented some symptoms of a rare type of syndrome that he could not guess just by view. we stayed in the hospital for 10 days until he was totaly recovered and ate the amount of food tha he needed.

we made all type of medical exams (heart, nutritionist, brain, genetist, etc.) everything seemed to be ok but the genetist decide that we needen a genetic exam.

we waited like a month for the results because the laboratory saw that there was something wrong with the 5th chromosome but they couldn't see what was it. after all the waiting, the results were clear, our son had Cri-Du-Chat Syndrome. my husband and i were devastated but day by day we understood that he was our angel sent from the sky.

inmediatly when we found out about the CDCS we decide to put him in 'early stimulation' (i don't know what is the exact term for that).

the month has passed and out son is evolving a good as he can! he is trying to crawl, he eats everything smashed and he recently learn to hold his bottle. he turns upside down, he holds things, he has two theeth, and i could continue so on...

the neurologist was amazed with his evolution so far and i am the proudest mother in the world!

i hope my story can help you dealing with this rare syndrome and remember, never ask God WHY is this happening to me? always ask him WHAT FOR?

if you have any question don't doubt about asking, i'll be happy to.

hugs


claudia alvarado
the proudest mother

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3 Replies:

  • hi claudia, my name is sherri. Yes, Tomas is heaven sent. My son kevin, too has cri du chat. we will celebrate his 28 yrs on 3-8. he is in anticipation for a grand party and he expects the whole world to be in attendance!!!!!!!! he believes his life work to have a toy store and take care of babies. his dream has come true. Claudia, always remember first to listen to your angel and all else will be grande!!!!!!!!!
    kevin vaughn jedi 2 Replies Flag this Response
  • dear sherri... im sorry it took me so long to answer! thanks for your post.i don't know if it's apropiate for me to ask you about your sons life. i have lots of questions to ask, i would apreciate if there was no problem asking...waiting for your replysincerely yours,claudiap.s.: if you have a personal email that you could give me would be great! hope we can stay in touch
    clauditaalvarado 1 Replies Flag this Response
  • hi claudia, i was happy to have your response. and yes, ask away, kevin likes to be the center of attention. my personal email address is grahamturksnow@yahoo.com i look forward to corresponding. sincerely, sherri coulter
    kevin vaughn jedi 2 Replies Flag this Response
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