New to forum

Short Bowel Syndrome
#1

Hi I am the mother of a 4 month old who was born with Gastroschisis. He was born at 34 weeks by C-section and lost circulation to the bowel that was outside of his body. His entire lower intestine was removed to save his life, and he is now home after 2 months in the NICU. He is on home TPN and me and my husband do all of his care. He has a nurse who comes out once a week to take blood for labs. He is currently on a wait list for a small intestine and liver transplant though his liver seems to be doing okay.

Also, his pediatric surgeon has suggested a new procedure to my husband and I called STEP in which an attempt to elongate the bowel is made through a simple surgical procedure. I am wondering if any of you have heard of this because we are still considering it.

I am 21, my husband is 23 and we are both active duty Army stationed in Washington, DC. I would really like to talk to other people going through the things that we are facing with our son. The best to you all,

Ashley Barraza

#2

Hi,

My name is Ann. Our son Jonathan was the 1st child to have the procedure done in Texas and the 2nd or 3rd in the Nation. He was 12 at the time (December 2005). The procedure went well but we are still on TPN due to food sensitives and food allergies. You can feel free to call me on my cell at 832-242-4739 and I can TRY to find the parent’s telephone number who was the first to have the procedure done. Her son was around 3 or 4 years old and I beleive is also doing well.

Take Care,

Ann

mrsbarraza sbs-cpt4307@lists.careplace.com wrote:

#3

Ashley,

Our son, Luke, had a STEP in Boston in Dec. 2005 (2 mos. old) at Boston Childrens with the surgeon who pioneered the surgery, and we would be happy to chat with you. Additionally, we’re located in Silver Spring, Maryland, just outside DC, so not too far from you. We’re seen at Childrens National - I imagine you’ve spent lots of time there, as well. STEP can certainly provide more surface area to the bowel and for the most part, I would say that our son has progressed well since his surgery. However, there are other therapies that he’s currently on that we believe have had just as significant an impact on his overall health, if not more so. He’s gradually being weaned off TPN and is making slow enteral progress. Please feel free to email me at your convenience and let’s set a time to talk. By the way, my husband was also Army…he was officially discharged from the reserves last year.

Krista Middlebrooks

kmiddlebrooks@verizon.net

From: mrsbarraza sbs-cpt4307@lists.careplace.com
Date: 2007/06/13 Wed AM 09:41:28 CDT
To: Kmiddlebrooks@verizon.net
Subject: [sbs] New to forum

#4

Thanks so much for sharing your experience with STEP. I think we are leaning towards trying it. Our son’s surgeon is really great and he will be working with Children’s who I’ve read is really a great hospital for this. I wish your family the best and I plan to stay around the forum as much as possible. We’re still getting settled in a new house and only have internet at work! Thanks again for the email, and I hope everything is going well with your son.

---- awill sbs-cpt4307@lists.careplace.com wrote:

#5

Yes, my name is Eileen and we took my son Jules to
have the “Step” procedure. It is only performed in a
handful of places in the US and Boston Children’s
Hospital is by far the most qualified location, since
Dr. Jaksic and his collegues developed the procedure.
Your son needs enough dialated bowel to work with.
They put incisions in the intestine to lengthen it and
even though it is a lengthy procedure it is much less
risky than some of the other options out there. I
would recommend visiting Boston Children’s Hopsital
web site. They have all the info. online. Your son
will need an upper GI follow through to determine if
he is a good candidate but if the procedure is one you
can do to buy time, I would absolutely do it. The
staff in Boston is wonderful and they have continued
to help and work with us. If you need more
information or would like to talk just let me know;
I’d be more than happy to give you my phone number.
Good luck and hang in there!
-Eileen
— mrsbarraza sbs-cpt4307@lists.careplace.com
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Hi I am the mother of a 4 month old who was born
with Gastroschisis. He was born at 34 weeks by
C-section and lost circulation to the bowel that was
outside of his body. His entire lower intestine was
removed to save his life, and he is now home after 2
months in the NICU. He is on home TPN and me and my
husband do all of his care. He has a nurse who
comes out once a week to take blood for labs. He is
currently on a wait list for a small intestine and
liver transplant though his liver seems to be doing
okay.

Also, his pediatric surgeon has suggested a new
procedure to my husband and I called STEP in which
an attempt to elongate the bowel is made through a
simple surgical procedure. I am wondering if any of
you have heard of this because we are still
considering it.

I am 21, my husband is 23 and we are both active
duty Army stationed in Washington, DC. I would
really like to talk to other people going through
the things that we are facing with our son. The
best to you all,

Ashley Barraza

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#6

When we discussed lengthening procedures with our surgeon he said one option to consider was to first do the bianchi procedure and then if needed follow with the STEP procedure. In a good situation, the bianchi would give more length and then when you do the STEP, that length would then get increased even more. Once you do the STEP, I don’t think you can go back and do the Bianchi. I agree that Dr. Jaksic would be the best person to consult if possible. Fortunately, we haven’t needed to have any lengthening procedures done, so I can offer too much more.

Good luck with everything.

----- Original Message -----
From: aileen
Date: Thursday, June 14, 2007 1:41 pm
Subject: Re: [sbs] New to forum
To: ajkrok@optonline.net

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~--------------- all text below this
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Yes, my name is Eileen and we took my son Jules to
have the “Step” procedure. It is only performed in a
handful of places in the US and Boston Children’s
Hospital is by far the most qualified location, since
Dr. Jaksic and his collegues developed the procedure.
Your son needs enough dialated bowel to work with.
They put incisions in the intestine to lengthen it and
even though it is a lengthy procedure it is much less
risky than some of the other options out there. I
would recommend visiting Boston Children’s Hopsital
web site. They have all the info. online. Your son
will need an upper GI follow through to determine if
he is a good candidate but if the procedure is one you
can do to buy time, I would absolutely do it. The
staff in Boston is wonderful and they have continued
to help and work with us. If you need more
information or would like to talk just let me know;
I’d be more than happy to give you my phone number.
Good luck and hang in there!
-Eileen
— mrsbarraza
wrote:

~--------------- sent
via careplace.com
~-~ mrsbarraza posted the message below in the Short
Bowel Syndrome Community Forum.
~-~ The entire conversation can be found here:
http://www.careplace.com/forum/topic/4307
~-~ To respond to this message, reply to this email
or sign in to CarePlace.com
~-~ To start a new conversation, email
sbs@lists.careplace.com or sign in to CarePlace.com
~-~ To see mrsbarraza’s profile, go here:
http://www.careplace.com/view/mrsbarraza
~--------------- all
text below this line will be cut off in your reply

Hi I am the mother of a 4 month old who was born
with Gastroschisis. He was born at 34 weeks by
C-section and lost circulation to the bowel that was
outside of his body. His entire lower intestine was
removed to save his life, and he is now home after 2
months in the NICU. He is on home TPN and me and my
husband do all of his care. He has a nurse who
comes out once a week to take blood for labs. He is
currently on a wait list for a small intestine and
liver transplant though his liver seems to be doing
okay.

Also, his pediatric surgeon has suggested a new
procedure to my husband and I called STEP in which
an attempt to elongate the bowel is made through a
simple surgical procedure. I am wondering if any of
you have heard of this because we are still
considering it.

I am 21, my husband is 23 and we are both active
duty Army stationed in Washington, DC. I would
really like to talk to other people going through
the things that we are facing with our son. The
best to you all,

Ashley Barraza

__
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to http://www.careplace.com/account-notifications

____________________________________________________________________________________Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center.
http://autos.yahoo.com/green_center/

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#7

Thanks so much to everyone who has shared their personal experience. Our son is having the upper GI study tomorrow to determine if he is dilated enough to attempt the STEP procedure. I would like to ask everyone who has had the procedure done if it improved their child’s condition at all.

#8

I can only speak for our situation specifically, but I honestly can’t say that I know my son’s overall progress and improvement are directly related to STEP. I wish there were a definitive before and after test that could confirm the success of the surgery, but I suspect it’s a combination of the surgery and the therapies he’s undergoing that has resulted in at least some level of gut rehabilitation. We’ve no reason thus far to regret the surgery.

However, I think that even the surgeons will tell you that they can narrow and lengthen the bowel, but there is no guarantee that the integrity of the bowel will be the same, or that the bowel won’t re-dilate. This surgery has both its supporters and its detractors. You should know the arguments of both sides, and be prepared to ask your surgeon(s) about the different perspectives.

I would also advise you to consult with at least a couple of surgeons who have actually done a STEP. Find out how many they’ve done, and what the outcomes have been with the kids who have had the procedure.

Best of luck to you. Please don’t hesitate to email if you have any questions.

Krista

From: mrsbarraza sbs-cpt4307@lists.careplace.com
Date: 2007/06/18 Mon AM 08:33:04 CDT
To: Kmiddlebrooks@verizon.net
Subject: Re: [sbs] New to forum

#9

We have received a number of cautions from many people about proceeding with
STEP or other such surgical procedures, including from some other doctors at
Boston Children’s who have seen mixed overall results from these procedures.
It is a very good idea to get as much information as possible, especially
from other doctors who are not affiliated directly with the STEP team (they
are likely to be positively biased about the procedure they invented). The
short gut intestine is inevitably a very fragile organ and these procedures
can be very hard on it, and STEP in particular cuts through a lot of stuff.
We were generally advised to only consider surgery for clear cases of a pouch
or other obstruction that might cause bacterial overgrowth, but that
otherwise it is best to wait for a couple of years and allow the intestine to
adapt on its own, before considering more invasive procedures.

  • Randy
    (dad to Max, 1yr old, with 25cm intestine due to very long segment
    Hirschsprung’s)

On Monday 18 June 2007 07:33, mrsbarraza wrote:

#10

Thanks again to everyone who shared their experience about the STEP procedure. Unfortunately, the upper gi showed that my son’s intestine is only about twice it’s normal size and since he only has 5 cm, they said that a STEP would not improve his condition much. So we are just waiting on the transplant. We got a call on Sunday about a possible set of organs, but they called back to say they were doing to someone else. Big letdown, but if someone else got them it’s because they needed them worse. Who else is waiting on organs? And if you got them already, how long did you have to wait?

#11

I will be out of the office July 2nd through July 9th For immediate attention please email Linda Taylor at ltaylor@color-art.com or call her at 314-432-3000x608

Paige Solomon