Short gut babies

lovemyjob · Jun 30, 2006

Level IIIc here (no transplants.)

The short guts I have seen have all had applications sent in for transplants....not all have gotten approved. The one I saw who got rejected was in a horrible state (the worst prolapsed stoma I have ever seen or even could have imagined, prob in part from the tpn.) She ended up going to see Jesus because she kept bleeding out from her stoma and finally coded.

I have not seen any of our neos suggest removal of life support because of short gut. They have weaned them from the vent or trach'd them (BPD) and then sent them on home to wait for transplant or death.

I would have a problem with withdrawing support soley b/c of short gut. We have sent short guts home with TPN (there are some really neat home pumps.) I like to see them go home and be with their families and allow the parents to spend as much time as possible with their child before he dies. If the kid was not a transplant candidate, I could see making a DNR.

LilPeanut, MSN, RN, NP · Jul 1, 2006

I agree with the above poster. We have a large number of short guts. (our city has the highest national rate of gastro.)

In general, we have been reasonably successful in getting our babies off TPN, and most who need the gut transplants have full length gut issues that I cannot remember the name of the condition, but there's a lack of microvilli, anyway, we are pretty good with getting our NECers through it.

They may have chronic health problems, but many of them do so well and some that it seemed like they would never get off TPN, have managed to do so.

Mags4711, RN · Jul 1, 2006

Level IIIc here (no transplantation program...yet), we do a HUGE number of short gut's as one of our surgeons is considered an expert on it and has started a wonderful short gut program to attempt to aviod transplantation if at all possible. We've started to do the "Step" procedure here as well (it's a bowel lengthening procedure).

If I had a short gut, and it had X number of centimeters of bowel (different for each baby, given size, etc.), I think I would want to take him/her home on TPN and love them until the end. If the baby were itty-bitty and sick, then I'd have them taken off, but that is just my opinion. You are right, we never know how they will do as they grow. But for me personally, I know I could not, nor would not want to put my child through all they'd have to (TPN, OR's, Transplantation, etc...). Never a normal life.

Mags4711, RN · Jul 1, 2006

And as far as what our surgeons tell them? I can't say in every case, but I am certain they never tell them exactly what they have ahead of them.

MA Nurse · Jul 1, 2006

Hey,
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'm in level 3 NICU, too and see a lot of short gut babies. We do the surgeries. right now out of about 34 pts., we have approx. 3-4 short gut babies. We have one that is 9 months old. I really like the baby, he was a premie and he is doing so well developmentally, but I feel so sorry for him. He needs a lot more normal stimulation than he gets. In our unit we seem to always do everything the parents want, and we very rarely see our babies get gut transplants. They go home and we do a lot of D/C teaching.

One nurse said yesterday she heard that a grandma let her grandbaby lick a sucker in our NICU! Without the nurse being aware, of course! He's 6 months old, only 6cm gut left!! Nurse said she saw red in the ostomy bag just from a sucker! This family doesn't get it.

I agree that these babies are tortured, so are other micropreemies.

I hate to see them get so old, like this 9 month old with a very uncertain future.

LaNICUnurse · Jul 4, 2006

I'm in level 3 NICU, too and see a lot of short gut babies. We do the surgeries. right now out of about 34 pts., we have approx. 3-4 short gut babies. We have one that is 9 months old. I really like the baby, he was a premie and he is doing so well developmentally, but I feel so sorry for him. He needs a lot more normal stimulation than he gets. In our unit we seem to always do everything the parents want, and we very rarely see our babies get gut transplants. They go home and we do a lot of D/C teaching.
One nurse said yesterday she heard that a grandma let her grandbaby lick a sucker in our NICU! Without the nurse being aware, of course! He's 6 months old, only 6cm gut left!! Nurse said she saw red in the ostomy bag just from a sucker! This family doesn't get it.
I agree that these babies are tortured, so are other micropreemies.
I hate to see them get so old, like this 9 month old with a very uncertain future.

IMO, this grandma gets it more than some of us nurses. How rare is it that a 6 month old, 9mo, or older has never licked a sucker, ice cream, or had chocolate? They never get to go outside and feel the sun, wind or rain on their faces. Everything we take for granted. Our babies are the ones missing out. They need those normal experiences that we can't give them. Isn't it torture to not get to lick something sweet, and to only have the special formulas that we have for them. So what if it came out in the ostomy bag, at least the nurse knew where it came from. We need to be more lenient with families that know that their children may not make it out of the hospital. As long as it is not hurting him, his formula probably comes through just like that dye from the sucker.

LilPeanut, MSN, RN, NP · Jul 4, 2006

Actually, our OT dept uses suckers for our babes. Obviously if the kid is NPO, that's another issue, but a little lick of a sucker can be great for combatting oral aversions.

Gompers, BSN, RN · Jul 4, 2006

Actually, our OT dept uses suckers for our babes. Obviously if the kid is NPO, that's another issue, but a little lick of a sucker can be great for combatting oral aversions.

Our speech department also uses them. Dum-dums, to be exact. Usually cherry, because the kids seem to like it's simple sweetness the best. They use it on the trached BPD babies who were intubated so long that they were orally averted by the time they got trached, recovered, and were able to bottle feed for the first time. These kids aren't NPO (usually have G tubes, sometimes still just an NG) and usually are 44+ weeks gestation by that point. The suckers actually do help, especially when we are getting them ready for spoon-feeding cereal and baby food.

We've also had short gut babies who were NPO well after their surgeries, not because they still had active NEC, but because they lost so much bowel that when we do give them food (even breastmilk or Neocate), they just dump it right out the other end. These babies are just in such pain that we end up stopping feeds completely. Those kids are offered suckers, though. I mean, really, how much "food" is actually in a few licks of a Dum-Dum? We've even done it on babies who still have NG to suction if they're way post term, because really not much is even consumed or absorbed. These are all usually kids who we are getting stable to go home on TPN with Broviacs, awaiting bowel-liver transplants. Our Peds GI specialist recommends the suckers because he's seen a lot of kids finally get the transplants only to refuse to take food orally because they've never experienced it before.

Now, MY real issue with these very short-gut babies is this...

We've stabilized SO many of them after sugery, sent so many of them home on TPN, heard about so many of them getting on the transplant lists...

And not a SINGLE one of them survived long enough for it to actually get it.

I understand about wanting to send a baby home to be with its family. We sent one baby home on hospice as soon as she stabilized post-op, maybe a week later. She had NOTHING left. They fed her Pedialyte by bottle and gave her sublingual morphine for the two or three weeks she lived. THAT kind of thing I support.

But the others...who go home on full TPN...seriously. Most of them are back in Peds or PICU on a weekly basis, getting blood and platelet transfusions. Other times it's problems with their Broviacs, often requiring return trips to the OR for new lines. All of them are in pain. Liver failure is a horrible way to die. If I saw just ONE baby actually get a transplant and survive, I might be more optimistic. But if it was MY baby...no way. It's a pipe dream.

Sorry so long-winded. I've been the primary nurse for way to many babies that had NEC, I guess.

BittyBabyGrower, MSN, RN · Jul 4, 2006

I hear you Gompers....we have several short gutters right now. The problem is that they usually need a gut and liver (I believe Pittsburg only does them together??) and the donors are far and inbetween. We have had a few kids on the list and we even had one on the helicopter ready to go and we got the call that the gut was bad on this one, etc.

We give them tastes of things, but nothing to sugary.

These are sad, sad kids. I feel so bad for the families. We get hospice involved with them and the parents can take them home for a few hours on holidays with the hospice nurse on a pass. But they spend most of their time in the unit, looking at us or out the window

MA Nurse · Jul 5, 2006

IMO, this grandma gets it more than some of us nurses. How rare is it that a 6 month old, 9mo, or older has never licked a sucker, ice cream, or had chocolate? They never get to go outside and feel the sun, wind or rain on their faces. Everything we take for granted. Our babies are the ones missing out. They need those normal experiences that we can't give them. Isn't it torture to not get to lick something sweet, and to only have the special formulas that we have for them. So what if it came out in the ostomy bag, at least the nurse knew where it came from. We need to be more lenient with families that know that their children may not make it out of the hospital. As long as it is not hurting him, his formula probably comes through just like that dye from the sucker.

Oh, I agree. I don't know this pt. but I actually thought it was funny the grandma did that. I do feel so badly for these babies.

We sometimes give Sweetease, too...so I'm sure a sucker is not that much different! The nurse was more concerned that he was teething and might chew off a piece and choke. Yikes! :uhoh3:

LaNICUnurse · Jul 5, 2006

Level IIIc here (no transplantation program...yet), we do a HUGE number of short gut's as one of our surgeons is considered an expert on it and has started a wonderful short gut program to attempt to aviod transplantation if at all possible. We've started to do the "Step" procedure here as well (it's a bowel lengthening procedure).
If I had a short gut, and it had X number of centimeters of bowel (different for each baby, given size, etc.), I think I would want to take him/her home on TPN and love them until the end. If the baby were itty-bitty and sick, then I'd have them taken off, but that is just my opinion. You are right, we never know how they will do as they grow. But for me personally, I know I could not, nor would not want to put my child through all they'd have to (TPN, OR's, Transplantation, etc...). Never a normal life.

That's me also. I think they need to go home to have their last days be as normal as possible.