New to the site

Hirschsprung's Disease
#1

Our son was born july 24, 2007 at camp lejeune, north carolina. my husband was born with hd and we knew our son had a chance of having it too. during the whole pregnancy we knew this, so when i delivered by c-section and they told us something was wrong my heart sank.

He was transfered to ecu where they didnt have any surgeons, so he got transfered to unc hospital. there when he was 2 days old he had his first sugery that took over 5 hours. they came back and told us he has short gut syndrome hd.

His whole large intestine including the illeocecal valve was bad including part of his small intestine. he has had over 10 surgeries and over easter weekend we almost lost him. they had to resesitate him twice. he had 5 infections that he wasnt supposed to survive. they gave him a 2% chance of survival. he is now 14th months old and on 9-11 got on the transplant waiting list status 1. he will be getting a whole small intestine and part of a large intestine. even with this we could lose him though.

if there is anyone else out there whose child has this short gut syndrome or has had a transplant please email me. we have moved to columbus so that our son could be transfered to cincinnati for this transplant.

Thankfully my husband is in the military and he was able to move for this.

#2

I just wanted to offer my thoughts and prayers for your son. This is truly one of the saddest cases I have read about. Are you aware of the other Hirschsprung’s support group through yahoo? It is an international group and you may have better luck finding someone in your situation. What were the reasons for so many surgeries. It sounds like you have been through so much. I hope the transplant is the solution for your son’s problems. Are you working with Dr. Levitt in Cincinnati? I recently emailed him regarding my son and he was so kind to respond and offer advice. I have read nothing but wonderful things about him.

God Bless,

Jo

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#3

thank you for the advice. i wish the hospitals knew about websites like this, it might have helped us with the situation. since this is a rare disease to begin with. our son has the rarest case of it. in north carolina alone they only get 1 or 2 cases of this in the whole state a year, and of course ourson has it. he had so many surgeries because they werent sure what to do or how to handle it. his surgeon had only seen a few in his years of practice. i’m happy he’s on the list now but we can still lose him with the transplant. the main dr. we are dealing with in cincy is dr. kocoshis.

#4

so sorry you have to go through this. Your lil one has proven them wrong so far. I will keep you in our prayers.

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Janel
mom to:
Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), daily bag & cath enemas for bowel managment(9/08)

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— On Fri, 9/19/08, blondie04 hirschsprungs-cpt10401@lists.careplace.com wrote:

From: blondie04 hirschsprungs-cpt10401@lists.careplace.com
Subject: [hirschsprungs] new to the site
To: ajberchielli@yahoo.com
Date: Friday, September 19, 2008, 10:01 AM

#5

thank you for the prayers. he did prove them wrong i am just very scared that we will either lose him during transplant surgery or after. the last surgery he had they had to stop becausehe was losing so much blood. his insides were so hard and stuck together. it is finally nice to talk to other people that have kids with hd. its also nice that everyone i have seen on the site hasnt had to go through what we have to.
thanks, jackie

— On Fri, 9/19/08, Tysmom hirschsprungs-cpt10401@lists.careplace.com wrote:

From: Tysmom hirschsprungs-cpt10401@lists.careplace.com
Subject: Re: [hirschsprungs] new to the site
To: nascarmom48@yahoo.com
Date: Friday, September 19, 2008, 5:34 PM

#6

my heart goes out to you and your family. I wish you guys the best of luck.

That is one thing (beside all the many) that sucks about HD, once our child are out of the wood and doing find, yrs down the road we have to worry about our grandchildren.

If I may ask, how is you husband handling this. I wonder b/c I wonder how my 2 sons will feel if they pass HD to their children.

#7

My thoughts and prayers are with you and your family, my son is almost 15 months old and was born with hd. Your sons case is much more extreme and I can not imagine how you and your husband feel. Your lil guy sounds very tough and determined.

#8

I will be thinking about you and your family. My father-n-law plays golf with a man whose grandaughter had an intestine transplant in I want to say Nebraska. I know that not too many hospitals do it and they had to move out of state. He is out of town right now, but when he gets back I will ask him more about it and share it with you.