Faith's Place: really fast note

Friday, March 27
Faith's being fed to her stomach. And she's tolerating it. And she was being fed to her stomach all along, even through her "supposed" j-tube. I'll elaborate more later, but I just had to post that. It's good news, because it means that eventually we will be able to work back up to eating by mouth!

Welcome to Faith's Place!

This is Faith's Place. Faith is a gorgeous little girl who had a long recovery from being born with a serious birth defect called gastroschisis (she had a hole in her abdominal wall and her intestines were on the outside at birth). Her intestines suffered some damage, most likely from being exposed to the amniotic fluid before she was born, and didn't work like they should; she was diagnosed with functional short bowel syndrome at about 4 months old.

Faith was born November 13, 2008, and spent her first 127 days in the NICU at Denver Children's Hospital. Because her intestines were not functioning, she was not able to receive nutrition in the normal way through her stomach and intestines, so she was on IV nutrition (TPN and Intralipids) during this time.

As a result of being on TPN for such a long time, she suffered liver damage to the extent that her doctors in Denver believed she should be evaluated and listed for a small bowel transplant. However, with a survival rate of only 50% at 5 years post-transplant, we weren't ready to take that step. Instead, we did considerable research on our own, and found out about an experimental treatment for babies with TPN-associated liver disease (TPNALD) called Omegaven, which was run by Children's Hospital Boston.

On March 24, 2009, Faith was admitted to Children's Hospital Boston, and became Omegaven baby #115. After only 30 days on Omegaven, Faith's direct bilirubin level (an indicator of liver health) had already dropped from 6.7 to 2.0, including an expected spike to 8.0 about 2 weeks after starting Omegaven treatment. Less than 6 months after starting Omegaven, she was fed 100% through her stomach (enterally), getting large amounts periodically during the day (bolus) and continuous feeds over night, and her liver function test results were *perfect*.

Her central line (a permanent IV line in her leg through which she received her TPN) was removed on September 16, 2009, after almost exactly 10 months to the day of having a central line, without ever having a line infection!

She learned to eat and drink by mouth, and by 18 months old, she was 100% orally fed! Her g-tube was removed in December of 2010, making her officially tube-free for the first time in her life. She is now enjoying life as a "normal" preschooler, with very little medical follow-up, and other than her scars, no outward signs of any of her journey to this point.

If you are new to Faith's blog, click on "2008" in the archive list, scroll to the bottom of the page, and work your way up to read her story from the beginning!

Statistics to consider...

-The survival rate of children with direct bilirubin levels greater than 3.0 for 3+ months is only 22%. (Faith's direct bilirubin levels were greater than 3.0 for about 4 months.)
-The survival rate of children on TPN for longer than 1 year is only 10%.
-The survival rate of children who receive a small bowel transplant at 5 years post-transplant is only 50%.
-The survival rate of children, with a history of TPN-associated liver disease and direct bilirubin levels of at least 2.0, on TPN, with Omegaven replacing Intralipids, is 98%!!!!!!

Education is the key to saving the lives of children with TPN-associated liver disease. The sooner these children receive Omegaven, the better their chances are of a "full" recovery (any damage that is done stays done, Omegaven does not reverse scarring in the liver).
Healthcare professionals who know about Omegaven and neglect to tell their patients it is an option, in my opinion, are failing to uphold their responsibility to do whatever it takes for their patients' health and well-being.
If your child is suffering from TPN-associated liver disease and you have found out about Omegaven and its benefits on your own, and your doctors are giving you the run-around when you bring it up to them, it's time to change doctors!! (believe me, I've been there) Omegaven WORKS, as long as it is not started too late!

Friday, March 27, 2009

really fast note

3 comments:

Total site visits:

Welcome to Faith's Place!

Search Faith's Place

Statistics to consider...

Short Bowel Syndrom and TPN Support Yahoo Groups

Blog Archive

Short-gut stories

Other gastroschisis stories

where Faith's readers are

Far-away places Faith's had readers from:

Followers

Encouraging music

Friday, March 27, 2009

really fast note

3 comments:

Total site visits:

Welcome to Faith's Place!

Search Faith's Place

Statistics to consider...

Short Bowel Syndrom and TPN Support Yahoo Groups

Blog Archive

Short-gut stories

Other gastroschisis stories

where Faith's readers are

Far-away places Faith's had readers from:

Followers

Subscribe To

Encouraging music