Interview with the National Coalition for Infant Health & recommendations for an exclusive human milk diet for preterm infants

Below is a full transcript of the conversation:

CAROLYN TENEYCK: Good evening. Tonight it really is our pleasure to welcome Dr. Mitchell Goldstein who is the Medical Director of the National Coalition for Infant Health, along with Susan Hepworth who is the Director of the National Coalition for Infant Health. Thank you and welcome to Prolacta. Susan, can you tell us a little about the Coalition—what its mission is, what its purpose is, and who are its members?

SUSAN HEPWORTH: Sure. The National Coalition for Infant Health is a group of clinicians, registered nurses, neonatologists, who want to go on beyond the bed side to try to give a voice to a voiceless population. We also have members that include patient advocacy organizations, parent groups, community health leaders—all aimed at trying to make progress with our law makers and policy makers to develop policies that benefit our most vulnerable population, everything from safety, access, nutrition and equality.

TENEYCK: Tell us a little bit more about the mission, the vision and the value of the Coalition.

HEPWORTH: The mission of the Coalition for Infant Health is to really education and advocate on behalf of this voiceless population. So we want to advocate for things like optimal nutrition, for safety, and really so that parents of these premature infants have the tools that they need once they leave the NICU so they never have to return and they have a great quality of care upon leaving the NICU.

TENEYCK: Dr. Goldstein, how did the Coalition get interested in exclusive human milk for preemies under 1250g?

MITCHELL GOLDSTEIN: Well it started with the Summit. We had a Summit in Washington DC earlier this year. The emphasis was on trying to find what needs in particular were important for infants, in particular in those who were born prematurely and in those especially at risk. And when you look at those babies under 1250g, that define a risk group that clearly has more risk, especially for feeding. At the Summit, we convened various focus groups whose mission was to look at and specifically identify areas where we felt we can do better and one of those areas was human milk.

TENEYCK: And mothers of premature infants often struggle to provide necessary calories for their babies. So how is exclusive human milk diet achieved in these babies?

GOLDSTEIN: Well I think you have to first look at the predicate. And the predicate has always been to figure out a better way to get calories to these babies. IV nutrition is unsatisfactory and certainly these babies don’t grow as well as when they have enteral feeds. Unfortunately, the enteral feeds that we have had here before have heavily relied on foreign milk proteins, specifically cow protein, to achieve weight gain, and again, when looking at babies, and when looking at the data, and when looking at the results in some of the more prominent studies that are out there, it has been shown that these babies have better tolerance, and for that matter, better growth and development when they are fed a diet which is exclusively human milk protein.

TENEYCK: We heard a great saying at the Summit that milk is medicine and breast is best, of course. Can you tell us about that? Why the Coalition really sees milk as medicine for these infants and not just and nice to have nutrition.

GOLDSTEIN: In fact, it’s more than medicine. When you look at milk, milk is in fact human tissue. And when you look at what is available for small preterm baby. The best is what is closest to what nature designed. When you look at the substitutes, when you look what else is out there, it comes close but it’s just not satisfactory. And when you look at feeding intolerance and when you look at other problems these preterm babies have, especially the long term problems in terms of potential allergy, potential feeding intolerance, aversion to feeding—possibly a result of intolerance to feeds and more importantly than anything else, necrotizing entercolitis, which is a very serious infection of the gut and bowel. By using an exclusive human milk protein, human milk diet, and human milk fortifier, you can assure that these babies have the best chance for the best possible outcome.

TENEYCK: Can you explain to us the difference between a human milk-based fortifier and a human milk fortifier?

GOLDSTEIN: It’s kind of a tangle of words. When you look at it at the standpoint of the commercialization, it sounds like they’re doing pretty much the same thing. But the reality is very different. The reality is that if you use a milk protein, which is human based, that is that it derives from an actual human being as opposed to a cow or other source, you’re getting something that was specifically designed for that baby. When you look at something that comes from a cow or soy product, this is something that is perhaps close but not identical. And the results that we’ve seen again from a lot of these studies have shown that these babies have better feeding tolerance, they get less necrotizing entercolitis—this very serious bowel infection—and most important, again, there are other types of concerns we have for the long term. We don’t know what these fortifiers will do 20, 30, 40 years out in terms of what they will contribute to morbidity and mortality of these people, whether it’s heart disease, asthma, atopic dermatitis or any one of a number of other things. By way of using an exclusively human milk diet, we can perhaps preempt these and essentially have a healthier individual for its life.

HEPWORTH: One of the reasons the National Coalition for Infant Health took on this issue of optimal nutrition, it’s just as Dr. Goldstein suggested—the data is there, the science is there. These preemies need the best nutrition possible and for them, that’s an exclusive human milk diet. So one of the things we advocated for at this Summit that we had in June, it’s that we had a Preemie Matter National Policy Summit—the first of its kind—we brought together all of these organizations, congressional leader, congressional staff, to try to raise awareness with them and also with the media so that we can get policies surrounding this most important issue and that can include making sure that preemie moms who leave the NICU can still have access to hospital grade pumps. That’s something that’s really important that can help with the exclusive human milk diet so that’s one of the reasons that we took it on because it’s pretty obvious. The science and the data are there to support it.

GOLDSTEIN: These are really excellent points and one of the things that I see as a neonatologist is so many of these preemie moms giving up way to early on breastfeeding and provisioning of an exclusive human milk diet and one of the serious problems we see is that they don’t receive the necessary support from the hospital through the pediatrician after hospital discharge. And again, as pointed out, the idea of having availability of a breast pump but again option of optimal nutritional provisioning are things that we really strive for in respect to the Coalition.

TENEYCK: And one of the things that I saw came out of the Summit is a really strong statement about informed consent. And we think of informed consent of all forms of all kind of procedures and medications that parents have to sign off on. But we haven’t really thought about of the reverse of that where if you’re not giving them exclusive human milk, you’re giving them something else, but they have no idea about that, and the Coalition has made a very strong stake in the ground about having these parents have to know about what exactly are their babies receiving. So tell us about informed consent and what your views are about that.

HEPWORTH: Yeah, so because the exclusive human milk diet is so important that it’s something that came out of the Summit that all of these leaders thought that is was something that we need to address because it’s such an important issue that preemie parents need really to opt out because it’s so important. Instead of opting in for an exclusive human milk diet, we really need to have them be informed so informed consent and opting out of that important thing.

GOLDSTEIN: The word is really to assent. And that is the parent is informed that we will be doing what’s medically indicated and medically best for their child in terms of provisioning a human milk diet, an exclusively human milk diet. And yes, again, it shouldn’t be forced upon the parent, but good data should accompany that discussion and they should be made aware of the fact that our intent is to provide something natural and closely matches the baby’s physiology. When you look at it a standpoint of providing cow’s milk-based formula or those that are based on soy or other material, again, this is the foreign protein. This is the stuff the body reacts to. And it’s our feeling that in many ways, the parent should be consenting to that as opposed to their baby receiving an exclusive human milk diet which is what nature intends.

TENEYCK: Makes sense. We heard a lot about your concern about quality and safety with donor milk and human milk fortifier. Can you share with us—I know Dr. Goldstein, you said human milk is a biologic, its milk is medicine—how does the Coalition take a stand on quality and safety and ensuring that these fragile infant get the highest quality in safety in donor milk as well as in human milk fortifier.

HEPWORTH: I think that’s one of the reasons that we address the safety and quality issue at the Summit. We certainly don’t want mothers going to other sources other than anything that can be 100% verified and tested and is totally safe for their premature baby. So that’s an issue we wanted to raise with lawmakers and the community health professional, policy people, people who really have a sway in these decisions. If we’re going to advocate for an exclusive human milk diet we have to take the measures to ensure that all of that donor milk is 100% safe for those infants.

TENEYCK: Dr. Goldstein, from a clinical perspective, how do we do that? How do we ensure that the donor milk is safe?

GOLDESTEIN: When you look at it from the standpoint of making sure that you have things that are in place, not only from a standpoint of checking very carefully that the people who you think are donating, are in fact, donating, but also from a standpoint of making sure that human milk is as safe as it can possibly can be. So you look for bacterial counts, you look for contamination within that, you make that you hold it to a much higher standard than that of many other things that are out that. And that includes, for that matter, standard milk that you have available. In many ways, you want milk to be as safe as blood. And when you look at the advances that we’ve made over many years in terms of the blood industry, screening for infectious disease, the making sure that the blood is safe not just for the majority, but for 99.999% of the population. You’re getting to the point that the vast majority of the people can consider safe. You want parents to have a reliance on this. You want to think of this as something that they can look at as something not only that is best for their baby but something that not going to cause problems for their child later on in life. And so again, I think that the metric really is to make sure that when you have something that is quality, that that is in fact as well, safe.

TENEYCK: Obstacles. We heard a lot about obstacles that moms have in achieving good breastfeeding, having enough supply and helping them along the way to add those calories and extra fortification. What are some of the things that the Coalition is advocating for to help moms?

HEPWORTH: One of the things we’re advocating for also came from our Preemies Matters National Policy Summit in Washington DC. We want insurances to cover hospital grade pumps once those mothers leave the NICU so they have access to that so they can continue their babies as optimally as possible.

TENEYCK: Exactly. Dr. Goldstein, anything?

GOLDSTEIN: And again, to echo what was said in respect to insurance. We really need to work on this very, very closely. And again, it’s not about what happens today, but it’s about what happens tomorrow. A lot of these small preterm infants, will develop morbidities, will develop problems later on in life, will have growth deficits, will have problems with maintaining weight, will have other issues that involve development. But the one thing that we can do and the one thing that we can do very well at this point in terms of preempting a lot of these problems, is to provide them with the best possible nutrition. And it’s important that the insurers understand that if they go in the direction of nutrition that it will reap good outcomes for them and they will have less cost-based problems later on with these children.

TENEYCK: You talked about necrotizing entercolitis. As a provider, a neonatologist who sees the damage of that and the reduction of it based on exclusive human milk diet, just give us some more texture around that and how important you feel as a provider from what you’ve seen in your practice that makes in this tiny 1250g or below baby.

GOLDSTEIN: The effects of necrotizing entercolitis can be devastating. Many times we look at it as a little feeding intolerance, a little time for the baby to recover. But on its mildest, it’s something that still causes the risk for stricture and problems later on with feeding. At its worst, it’s a parent’s worst nightmare. It’s a situation where you have gross destruction of the entire bowel. It can be fatal. In other situations, it can be loss up to 80% or 90% of the bowel and what we created is a child that is nutritionally crippled for the rest of his or her life. There has been certain success with bowel transplantation, but this is a very, very expensive procedure and it requires the baby to have medication for his or her entire life. When you look at it relative to the context and again understanding there are costs to provide what is safe and quality based solution. The provision of exclusive human milk-based diet is the one way you can basically stand up and do something about this and prevent a lot of these morbidities.

TENEYCK: Excellent. Susan, what progress does the National Coalition hope to make on the issue of exclusive human milk and what things will you put in place to create awareness, to broaden your reach on Capitol Hill and well as in the media, and to make the voices of these voiceless children known?

HEPWORTH: I think one of things that we have to do in order to move the ball down the field as far as exclusive human milk diet is concerned is that we have to raise awareness about it. It’s something that experts like Dr. Goldstein know all about. It’s not necessarily something that a brand new mom who maybe had a premature infant that she didn’t know would be premature and they hadn’t had the time to do their research. That’s something that’s really important is that we have to raise awareness about it. We have to raise awareness for those moms and dads who are having a premature infant. And we have to raise awareness with our policy makers and our law makers in Washington, DC so once again we can create the kinds of policies that give preemies and their families all the tools to be as healthy as possible.

TENEYCK: I know that the Coalition is very active in social media… [Susan: Yes] infographics… [Susan: Yup] policy briefs—Dr. Goldstein has a policy brief coming out next month? [Goldstein: Right, mhmm] On exclusive human milk?

HEPWORTH: Yeah, so there are several ways that we try to raise awareness and we also try to do it through the media. They’re a very powerful voice, as we know. We do policy briefs, web videos; we’re very active on social media, blog posts. We try to get it out to as many organizations as possible, ask them to share that information and hopefully we hit enough people that it starts to make a difference, and I know that it will.

GOLDSTEIN: This is not a secret but it really requires that we get the information out there so there is much more broader knowledge and a more educated population that is determined to get the best for their babies.

TENEYCK: Well, during Prematurity Awareness Month, we really want to bring a high spotlight to this issue and I know with your policy brief coming next month, tell us some of the other things that you all are doing during Prematurity Awareness Month to highlight the work of the Coalition.

HEPWORTH: We’re obviously, like we said, very active on social media and that’s one thing that we did today. We would encourage everybody to maybe change their profile pictures to the World Prematurity Day. It’s got a little hashtag and it has November 17th which is the actual day in the month. But it’s one of those things that will catch a lot of folks’ eyes. “Why is everything purple this month?” I’m wearing a purple dress. It’s because we care about preemies and that’s the color for National Prematurity Awareness Month. So we will continue to do things like that. We will make sure that it gets to lawmakers office on Capitol Hill. The folks that we partnered with already, who perhaps came to our Summit and spoke to us, these are lawmakers who had real situations affect them in their lives in prematurity. We will make sure that they have that information and so that they can come to us as a resource. We’re very plugged in to the premature community. When they need a parent perspective, we can perhaps find that parent perspective to help them, to shape and craft these policies.

GOLDSTEIN: And again, I think when you look at the standpoint of where we’re going with this, we want preemies to have more of a voice. For now, we are the Coalition, we provide that voice for the preemies but we need to make this better. We need to grow this. And the hope is at some point, to have a congressional caucus to support and to advocate and to help us put the law in the books to really help our babies.

TENEYCK: Thank you all so much for joining us today.

HEPWORTH: Thank you.

GOLDSTEIN: Thank you.

TENEYCK: Any closing statements, Dr. Goldstein?

GOLDSTEIN: As Medical Director of the National Coalition for Infant Health, we would like to congratulate and really applaud the efforts of those that are helping us to make National Prematurity Awareness Month the sort of occasion that really honors and benefits our most at risk infants.