Intestinal Fortitude: Healing a Child's Defective Liver

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Hi my name is ashley. My daughter was born at 25wks. When she was two weeks old developed necrotizing enterocolitis. She has all large intestine colin but only 15cm of small intestine. Today her omegaven came in and I really hope it helps. She has been on tpn an lipids since day one(3 months ago). Hee bili level is about a four but still it is scary to even think bout losing her. Yalls stories have given me hope. Thank u

ashley of AL 1:15AM May 25, 2012

We have a 9 mo old who has a short gut and liver damage from tpn. We are desperately trying to obtain omegaven for him in Illnois or Missouri with no luck so far. Does anyone know how we may do so without having to go to Boston?

amanda miller of IL 2:07AM April 21, 2009

My child is in the hospital in wisconsin with short bowel syndrome and since he got started on the omegaven his billirubin has dropped to just about a perfect zero. i believe that omegaven should be covered by medicaid and every child who is on TPN should have the chance to be able to use this amazing product.

allie of IA 1:27PM February 03, 2009

I hope they will be healed

ij;l of GA 6:47AM December 17, 2008

My grandson would not be alive if he did not have Omegavin!! He was able to get to see Dr. Puder in time because of a web page for another Micro villus Inclusion Disease baby. I visited my daughter in Boston for moral support. I would not have believed the change in Sammy if I had not seen it first hand.
Some babies may have other options, Sammy didn't. I wish more doctors would let their patients know of this option instead of brushing it off as useless. How many babies were sent home to die just because the doctors didn't believe that Omegavin is that good!!! I will not stop spreading the news of this life saving treatment.

Kit Freeman of GA 2:13PM November 18, 2008

First thing I would do is speak with Dr. Puder. Go Children's Boston and you will find his email there. He is your best source of information and he will respond to you. If you cannot find his email, please email me and I will put in touch with him. My email is ccates2000@yahoo.com I hope Emily is doing well. Also, google short gut wiki and there is a list of families there who would love to talk to you. good luck

Chelle Cates of TX 12:09AM September 18, 2008

Our daughter Emily is 8 months old, fighting SBS and liver failure. We like to find Omegaven in California to save our daughter's life. Can anyone help and give us advise??!! If we have to relocate to Boston, we will. We just want our daughter to have a chance at life. Doctors say that Emily has no chance but we do not beleive that. Emily has made it this far and is very strong.
Please help!

Denise Ramirez of CA 12:41AM September 03, 2008

Dan- It is obvious to me that you have not done your homework nor have you ever spoken to Mark Puder. Boston is neither trying to keep Omegaven a secret or have it only in Boston. Dr. Puder is working night and day to get Omegaven to every baby who needs it and get it WHERE EVER they need. It is the hospitals who are preventing children, like my son, from getting Omegaven and forcing people to go to Boston. We are from Texas and I know first hand that Texas Children's in Houston is using Omegaven and Cook Children's in Fort Worth is in the process of getting it. If your doctors told you Boston wouldn't help you get Omegaven, you should get new doctors. I also know first hand from Dr. Puder that he is working with the FDA and the drug maker to get the approval needed for every child in every state to have access to Omegaven. I also wanted to clear up your comment about the "propriety" tpn. Omegaven is not TPN, it replaces the lipids. And as far as Omegaven being propriety to Boston, Omegaven has been used in Europe for many years and is not a product of Boston. It is Dr. Puder who discoverd Omegaven's effect on TPN dependent children. If you have questions about how to get Omegaven you should contact Dr. Puder yourself. He will answer your email. Also visit the site that Kat gave you, there is a list of hospitals who are currently using Omegaven OUTSIDE of Boston. And after reviewing the list, I know of several hospital who aren't even on there. If your child needs Omegaven, there are ways to get it. NO ONE in Boston and least of all Dr. Puder are trying to stop anyone from getting this life/liver saving drug.

Chelle Cates of TX 3:04PM July 26, 2008

Dan, not sure about your comment and why you made it. Please go to http://grey.colorado.edu/shortgut/index.php/Omegaven and read about children OUTSIDE of Boston on Omegaven.

Kat of IN 9:03PM July 25, 2008