In our unit (level III NICU) because we have surgeons, we seem to see a lot of shor gut babies. Transported in from other hospitals. The one's born here usually get diagnosed in time to save most of their intestines.
What level NICU are you in? How many gut babies do you see, and how many are shortgut. How do you all treat them, and what do you tell the parents about them? Do your docs recommend removing ETT's, and support, or do you support all of them to the point where they end up getting liver failure from the TPN? Do your docs tell them that they can eventually become transplant candidates?
I know these are a lot of questions, but I am having ethical dilemmas about not making them DNR's when we know that they will be tortured until they eventually die anyway.
I'd be upset if I was the Neo too! What in the world was this baby doing in the cafeteria? Is this common in your unit? That is the last place I'd want an immunosupressed baby to go.
No, this is not usual. The family had permission to go outside, I think, or walk the halls of our unit, but took him to the cafeteria. I'm sure it won't be happeneing again. Talk about difficult family members!
We actually just had the ultimate of short gut who was taken off support. There was a 12d old with MCA and issues with not tolerating feeds. The babygrams were showing some unusual things, but no free air apparently. They finally did an exploratory lap and apparently at about 9-10w gestation, the gut stopped developing. The poor baby had essentially no small intestine at all. It was a brave and commendable choice by the family to withdraw support, though I'm sure very difficult.
We actually just had the ultimate of short gut who was taken off support. There was a 12d old with MCA and issues with not tolerating feeds. The babygrams were showing some unusual things, but no free air apparently. They finally did an exploratory lap and apparently at about 9-10w gestation, the gut stopped developing. The poor baby had essentially no small intestine at all. It was a brave and commendable choice by the family to withdraw support, though I'm sure very difficult.
I'm sure it was very difficult for the family. I am glad they were able to look past their loss, and do what was right for their child.
I'm at a level 3 also. We have a lil one born at 33wks with bowel obstruction who had multiple surgeries to resect. She's would take PO for some time and would have another obstruction. So of course after all that she is left with just 4cm (yes! 4cms!) of small bowel. She is on TPN and it seems that noone wants to do a transplant. She is now 4 months old and is as much a 4 mth old as any other except that she has no gut. How do we let a perfectly functional baby, live indefinitely off of TPN, when there is more we can do for her? She never relied on vents or any type of O2 (except for surgery). Her gut is her only issue.
This is the kicker. Her insurance company does not want to cover her anymore. They want to transfer her to another facility that is not as expensive and that can maintain her until...i don't know. Because she was transferred to us from a carribean island (we're in S. FL.) immediately after birth, they don't feel they can afford US healthcare. They want to ship her back home where they don't even have TPN. Or even better to the Bahamas where they do have TPN but where she doesn't have FAMILY!! I just don't understand why noone feels these kids lives are worth the surgery and the cost. They basically told mom that if she wants her kid to have a transplant she needs to fund raise like $350,000. And thats just the deposit they want before they'll admit her.
Ive read about a TPN that actually has saved many short gut kids. It's not as harmful to the liver, but we dont really use it in the USA unless the doctors really make a effort to get it. There's a handful of hospitals that use it, I think it's called Omegaven. But alot of parents have posted saying it saved there kids lives.
Ive read about a TPN that actually has saved many short gut kids. It's not as harmful to the liver, but we dont really use it in the USA unless the doctors really make a effort to get it. There's a handful of hospitals that use it, I think it's called Omegaven. But alot of parents have posted saying it saved there kids lives.
It is Omegavan, we are starting to use it in my hospital on the kids with severe liver damage...usually our kids are started on it after their Bili's hit a certain level or if they are severe short gut, but not everyone is doing it and parents have to agree to it and sign consent. On those using it though we have definitely noticed a decrease in bili levels.
In our unit (level III NICU) because we have surgeons, we seem to see a lot of shor gut babies. Transported in from other hospitals. The one's born here usually get diagnosed in time to save most of their intestines.
What level NICU are you in? How many gut babies do you see, and how many are shortgut. How do you all treat them, and what do you tell the parents about them? Do your docs recommend removing ETT's, and support, or do you support all of them to the point where they end up getting liver failure from the TPN? Do your docs tell them that they can eventually become transplant candidates?
I know these are a lot of questions, but I am having ethical dilemmas about not making them DNR's when we know that they will be tortured until they eventually die anyway.
Wow..I have never seen a short-gut kid on a DNR list nor have heard of our surgeons suggesting it. We have also never had a baby that died ONLY because of the short-gut.
This is usually temporary until the kid gets old enough to eat some level of solids.
We have used the following:
1. Slow continuous gavage feedings.
2. G-tube with slow feedings.
3. Alternate formulas, such as Albumentum that doesn't have to be broken down as much.
4. Added pectin to formula to thicken it.
Short gut is TOUGH to manage when you are on an all-liquid diet.
It was a brave and commendable choice by the family to withdraw support, though I'm sure very difficult.
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wjf00
357 Posts
One of the posts here mentioned giving sweetease to a short gut infant. Bad idea. Sweetease (D-21) is hypertonic and will depleat electrolytes.