hello every one ,, iam now working in the cardiology department and i see a lot of cases with congenital heart disease 

what we dont have here in my country is a program to enhance nutrition in these ill kids ..

so  almost for every case we diagnose for ex with big  VSD ,, we know for sure that he will be a malnourished child in the next few months  

my question may be beyond the scoop of this forum but i hope i could find some resources to help me address this problem

my goal is to help establishing a program in our unit to maximize the nutrition quality which is definitely will affect the outcome .  

how can i start ?? do i have to make a study over a certain population to have a data to be considered a cornerstone to any furthur steps ?

 

please help  

Thanks for posting about this, sounds like a bigger and very relevant question. I will promote it on "Home"

I would advice to connect with a nutritionist (if there is one), or alternatively some nursing staff, to set up a working group that could both investigate, set up interventions, implement and follow-up.

A good first step would be to analyze potential causes. The nutritional/dietary histories are key, and how intake relates to cardiovascular symtoms. I guess the problem could be related to either low intake or high (disease-related) demands.

 

thanks for your input 

Hi Aymen

 

I'm just a nurse and my perspective is nursing those babies.

Babies with heart and lung problems are often hard to feed as they drop in oxygen levels, get exhausted and start putting more effort in breathing than in eating.

They soon drop their ability to suck out milk, if breastfeed and if bottle feed they often choke and is at risk of aspiration because they cannot handle breathing, sucking and to swallow at the same time. So I have developed a way to feed those babies that I will describe. 

If I bottle feed the child I place it in my lap so I can see the face. I fix the ring on the bottle so the milk will come slowly. I also see to myself not being stressed maybe asking another nurse to care for other babies under my responsibility. I give the bottle to the baby and watch him eat, especially I look at his color and his breathing pattern. When he gets blue or pale and starts working more with his breathing, I gently remove the bottles nipple to give the baby some time to breath, to get his oxygen level normalized. As soon as I see it possible, before the baby starts crying because the loss of the bottle, I put the nipple back into the mouth, let the baby suck 5-8 times again and than make a new pause. This way of feeding takes time but soon the baby seems to learn and can take rather big meals. As I learn the feeding to the mother I just have to be around to help. 

If the baby is breastfeed I teach the same method to the mother. I tell her to take the breast away immediately as the childs color drop and to give it again after letting the baby rest and breath. You will probably have to let those babies eat more often than healthy babies.

One more issue is the taste of what's given to the baby. Many doctor's prescribe adding of different stuff into the milk to make the baby grow. I've even seen doctor's to advice mothers to suck out their breastmilk by machine, add some extra in the milk and then give it to the baby. Almost all those nutritional additives taste terrible. 

If you also gives the baby medication through the same nipple as you give milk, you have created a worse problem. It's very common for babies to refuse eating if they start connecting the nipple and the bottle with sharp and unpleasant taste. This problem was observed already in the 80's by Swedish doctor's. To solve one problem, a new one was created. Today it's common in Sweden to give babies i PEG (percutaneous endoscopic gastrostomy tube) for feeding but it's an expensive solution that calls for high hygiene standard. 
Before the use of PEG doctor's i the Swedish university clinic performing surgery on childrens hearts chose to recommend anything tasting good, with extra calories, to be given to induce growth before surgery. As nurses we could have those babies for month, trying to feed them in a way they tolerated. If throwing up becomes an issue, maybe because of to hasty feeding, pain can occur in the esophagus due to gastric acid. 

I don't know what is used and sold in your country but cream from cows milk tastes good and was among the recommended. Icecream made of cream also.  The cream sold in Sweden is pasteurized. Maybe some kind of oils can also be used. The main problem is to chose something that the baby like to taste.

That was some very simple thoughts about nursing to start with. Maybe people younger than me, working in heart clinic, can suggest good tasting nutritional additives that I don't know of. In Sweden where medication is sold to children a syringe should always be added and I always use syringe to give medication in the mouth, not to ever disturb the babies liking of the bottles nipple. 

 

 

I agree with the posts above. The first step is to recognize the possible etiology of malnutrition.

Possible mechanisms in the setting of cardiac patients are:

• inadequate intake
• poor absorption
• increased loss
• increased demand
• decreased growth potential
• extracardiac factors

The list is taken from here:

Nutrition and Heart Disease: Causation and Prevention

edited by Ronald Ross Watson, Victor R. Preedy

https://books.google.at/books?id=d8AzJo5FE3gC&lpg=PA260&ots=RqedD0iB1B&dq=cachexia cardiac infants&pg=PA255#v=onepage&q=cachexia cardiac infants&f=false