The Preemie Growth Project

Sharing Vital Information About Nutritional Issues for Premature Babies & Special Needs Children


In the NICU

THIS PAGE IS WRITTEN CANDIDLY, FROM ONE PARENT TO ANOTHER. NO INSULT TO ANYONE IS INTENDED.

Bad News: Currently there are no hospitals allowing early supplementation of liquid trace minerals in their Neo-Natal Intensive Care Units (NICU).  (If this changes, this page will be updated appropriately.)

Yes, physicians are aware premature and low birth weight babies suffer from trace mineral deficiency (it is in the textbooks after all), but Neonatologists are by nature Very Cautious when it comes to protecting the health of the children in their care, and this intervention has NOT YET gone through appropriate rigorous testing.  Unfortunately, that may NEVER happen for a variety of reasons (detailed below).

Your physician in the NICU will tell you they are aware of the deficiency issues, and they will be addressing it with TPN.  TPN is “total parenteral nutrition” – you can read more about it here: Total parenteral nutrition – infants (NIH)

Bluntly, TPN is *NOT* adequate – despite the intent to act as a complete dietary supplement, several key nutrients are absent, such as sulfur, cobalt and iron. You can point that out, and you are still going to be told “no” – politely, firmly, but still “NO.”  After all, just because you read on the internet that THIS COULD HELP YOUR CHILD doesn’t make it true.

It isn’t just about “not getting sued” – it is about being CAREFUL, and RESPONSIBLE.  Research is important, and twenty years from now, this may be “standard of care” but for now…

Right now, as the parent, you have to trust that the people in the NICU really, truly care about you and your child’s welfare.  They do.  They are *devoted* to children to the point where they have dedicated their lives to helping them.  They get up all hours of the day and night, give up time with their families, and will do anything they can to help your child, including protecting them from possible danger with non-verified products and protocols.

You are going to be asked to sign a document saying you won’t put anything in any formula or breast milk you bring into the NICU for your child.  While this may seem a little extreme, they are trying to make sure that scam artists aren’t selling desperate parents miracle cures made of chopped worms and spit.  (Trying to make a point here – not saying that anyone would ever actually do that, but these days, who knows?)

IF BEGGING HELPS

There is a chance (somewhere between “slim and none”) that you might have a neonatologist who is willing to step out and try this.  If that miracle happens (most likely because the situation is already so unbelievably dire as to be near hopeless), several things will have to happen:

  1. You will have to sign paperwork promising to release everyone and their brothers from any potential liability concerns if they do this. Think that through – ALL LIABILITY. FOR ANYTHING AND EVERYTHING.
  2. Your neonatologist will have to jump through unbelievable hoops through the hospitals “IRB” (Institutional Review Board) which monitors “human experimentation” to make sure this choice is ethical and moral. This will involve professional reputations and hospital politics.
  3. The manufacturer of any product you use will have to provide laboratory assays and toxicology reports for scrutiny, and if anything jumps out, the whole thing may be stopped without question.

Bonus: There are no established “safe levels” for any of the “trace” minerals for this vulnerable population. Healthy adults are assumed to get adequate amounts from a normal food supply – but you are in the NICU, and your baby isn’t eating steak yet, so you are in a bit of a predicament.

HOW MUCH?

If you or your medical support staff decides to make this happen, you then have to get an unopened bottle to the NICU (unopened to minimize chance of contamination).

The only brand there is actual *data* on (with reports from 2011 instantly available) is the “PDCM 72+” brand.  With that brand, your child would use 10% of one daily feed once daily.

Example: 15ml of breast milk or formula = dosage of 1.5ml of PDCM once daily

You can also pray. Praying is good.

 

WHY IS IT HARD TO GET THIS IN THE NICU?

  1. Trace mineral and vitamin supplement products are NOT regulated by the FDA, and while reputable companies follow standard industry practices, no one is making sure that is actually happening.  This makes people in the medical community nervous.  They like pharmacists. (Let’s be honest – everyone likes pharmacists!)
  2. There is no formal published research on this topic, and that isn’t going to change anytime soon.  Yes, a feasibility study has been done with amazing results, but someone with credentials after their name is going to have to repeat things before anyone believes it because this is paradigm changing stuff, and since the first two babies reported their “amazing results” in 2007, not one reputable researcher has stepped up to make that happen.
  3. Do you have any idea how much paperwork is involved in this type of research?  And how much it is going to cost?  Research is COMPLICATED.
  4. No one is going to get rich if it works.  The financial cost for this intervention is about $25 for a three month supply of the supplement for a premature baby, and there are already half a dozen companies out there that sell variants of it.
  5. No one wants to get sued. If it doesn’t work and your child DIES, you might sue them.  Who wants to run that type of risk?

The truth is, your neonatologist is by nature exceedingly conservative because THEY CARE.  As a parent, you really have no choice but to trust the “MD” (sometimes translated as “Minor Deity”) knows what they are doing.  They won’t give up on your child, but they don’t want someone making things worse, and until they know this won’t, they aren’t going to trust it.