Premature babies: ‘We have to do more,’ says neonatologist

In an interview with Medical News Today, neonatologist Dr. Charleta Guillory speaks about her work looking after very small babies, how health inequity affects prematurity, and what public health measures she set up to counter these.

In the United States, around 10% of babies are born prematurely each year, meaning before 37 weeks of pregnancy. Globally, there are about 15 million premature births annually.

While medical advances have ensured that many babies born prematurely survive and have good long-term outcomes, prematurity remains the leading cause of death in children under 5 years globally.

In this Special Feature interview, Medical News Today spoke to Dr. Charleta Guillory, an associate professor at Baylor College of Medicine and the Director of the Neonatal-Perinatal Public Health Program at Texas Children’s Hospital, both in Houston.

Dr. Guillory previously served as the Texas State prematurity campaign director for the March of Dimes. At the time of our interview, Dr. Guillory was on call at the Level 4 neonatal intensive care unit (NICU) at Texas Children’s and would be for the next 6 weeks.

Level 4 NICUs provide the greatest level of care for premature and critically ill babies. This is where the smallest babies, those born before 32 weeks and weighing less than 1,500 grams, are looked after.

Dr. Guillory gave MNT some background information on prematurity and the known risk factors. She also explained how the care of premature babies had changed during her career and how her unit and the families she is working with have coped during the COVID-19 pandemic.

We spoke about the babies’ long-term outlook, how she talks to parents, and what support family and friends can offer.

Dr. Guillory also discussed how the social determinants of health affect prematurity and what public health measures she has developed to address these.

We have lightly edited the interview transcript for clarity.

Premature births are on the rise

MNT: What exactly do healthcare professionals mean when they say that a baby is premature?

Dr. Guillory: According to the American Academy of Pediatrics (AAP), preterm birth is the delivery of an infant before completion of 37 weeks gestation.

There are three categories of preterm births: Late preterm infants are born between 34 weeks and 36 weeks and 6 days of gestation, moderate preterm infants are born between 32 and 33 weeks gestation, and very preterm births are born at less than 32 weeks gestation.

In 2019, preterm birth affected 1 of every 10 infants born in the U.S., and this is kind of frightening.

According to the Centers for Disease Control and Prevention (CDC), the rate of premature births decreased from 2007 to 2014. Their research shows that this is likely due to lower numbers of births to teens and young mothers.

But, the rate of preterm births rose for the fifth year in a row in 2019. Importantly, there are racial and ethnic differences in preterm birth rates.

The CDC explains that in 2019, the rate of preterm birth among African American women was 14.4%. This is [nearly] 50% higher than the rate of preterm birth among white women, where it is 9.3%, and Hispanic women, where it is 10%.

I’m really worried about what’s gonna happen.

MNT: Are there any specific risk factors? Who is more likely to have a premature baby?

Dr. Guillory: There are specific risk factors for preterm birth, including sociodemographic and obstetric factors.

These include maternal reproductive factors, such as a history of preterm birth and maternal age. A U-shaped relationship exists between maternal age and the frequency of preterm birth. Women under 16 and those above 35 have a 2-4% higher rate of preterm birth than those between 21 and 24 years.

Maternal health is also important. We look at infection, anemia, hypertension, preeclampsia, eclampsia, cardiovascular and pulmonary disorders, and diabetes.

Then there are maternal lifestyle issues, such as physical activity, history of substance abuse or smoking, diet, weight, and stress.

There are also specific issues, such as cervical, uterine, and placental factors, including a short cervix, cervical surgery, uterine malformations, vaginal bleeding, and placenta previa or abruption.

Multiple gestation, so having more than one baby, is another risk factor.

And finally, fetal factors, such as the presence of congenital anomalies, growth restriction, fetal infections, and fetal distress, can play a role.

Lack of prenatal care

MNT: What do you think is behind this rise in prematurity rates?

Dr. Guillory: I think it’s multifactorial. The social determinants of health are beginning to play a major role, [particularly] access to healthcare, especially with the dismantling of the [Affordable Care Act (ACA)]. We have a lot more people who are not insured.

Access to healthcare [is] a big problem for our mothers. And without that care, especially the prenatal care aspect of it, we’re going to see more premature babies.

Actually, I was looking at the data, and about 60% of our African American moms are not getting prenatal care in the first trimester. We had a baby [here] the other day, and mom had not had any prenatal care.

[Also,] we didn’t expand Medicaid. We had opportunities to expand Medicaid, and in Texas, Medicaid pays for 50% of deliveries.

We also have older moms. [We know that with age, we see an] increased number of premature births. We have moms who are working under stress because they need insurance. So all of this [leads to] increased rates [of prematurity].

With assisted reproductive technology, we have more triplets. Twins, triplets, multiple gestations, that all [adds to] the number of premature births.

MNT: It seems very counterintuitive not to have prenatal care.

Dr. Guillory: Exactly! If you want a healthy nation: we always knew that infant mortality was the best barometer for measuring how well a nation is doing.

We know that premature babies have the highest morbidity and mortality, particularly those born at less than 32 weeks gestation.

Expertise in these little guys

MNT: How has the care of premature babies changed during your career?

Dr. Guillory: The biggest challenge initially was survival, mostly from respiratory distress syndrome.

Improvements in the NICUs with the advent of surfactant treatment and antenatal steroid therapy to prevent and treat neonatal respiratory distress resulted in decreased mortality rates of premature infants.

Now, we focus on other things, using a more active management approach to sepsis, necrotizing enterocolitis, etc. With the discovery of the benefits of [breast] milk, survival has improved significantly.

Today, we don’t just want to improve the survival of infants, but we want to focus on improving long-term developmental outcomes.

MNT: Can you tell us a little bit more about how the focus has changed?

Dr. Guillory: There are two aspects to this. One before birth and one after. I [will talk] about the prenatal aspects first and our [obstetrician] partners and our maternal-fetal medicine [partners.]

[Prenatally], those [who are at increased risk of having a premature baby] should not just be taken care of by OB/GYNs. They should be taken care of by maternal-fetal medicine doctors, as these are high risk pregnancies.

These doctors deal with antibiotics for mothers with group B strep; they deal with antenatal steroids and delayed cord clamping. We know [that] if you allow more blood to reach the baby, it causes the blood pressure to stabilize. This decreases the risk of necrotizing enterocolitis and intraventricular hemorrhage.

What has changed is now when the babies come to us, not only do we have [better ways] to decrease respiratory distress syndrome, we have a small baby team or small baby group.

[This team] takes care of these babies specifically. So, not only are there trained neonatologists and neonatal practitioners, but we also have respiratory therapists and nurses at the bedside. We have a team that takes care of the small babies.

You really have to have the expertise in these little guys. What we are striving for is doing the things that get the best outcome for that group.

When I was first a neonatologist, what we did back then, we wanted babies to survive. Everything was [focused] on getting them to survive. Nobody was talking about survival intact.

Gradually, we got rid of the respiratory distress syndrome, and then [we started to focus on the next set] of complications in the premature baby group.

Premature babies have a high incidence of respiratory distress syndrome, necrotizing enterocolitis, intraventricular hemorrhage, and sepsis. Beyond 32 weeks of gestation, these go down. But before 32 weeks, the incidence is high.

The small baby group works specifically on things such as necrotizing enterocolitis. We know that necrotizing enterocolitis is better when mom’s milk is being used in the NICU. We then had donor milk come into play.

[In the past,] we used to give [a lot of] antibiotics to rule out sepsis. We now have an organized approach to infection. We use specific antibiotic therapy; we don’t keep [babies] on it very long. If the [microbial] cultures come back positive, we [can be] very specific with this.

All to decrease antibiotic resistance. I call it antibiotics stewardship.

Delayed cord clamping helps with intraventricular hemorrhage. Plus, getting babies delivered where they should be delivered so we don’t have to transport them, which increases the risk of intraventricular hemorrhage.

So, there is a shift where providers and the team develop expertise in caring for the small babies.

Our ‘work extends beyond the hospital’

MNT: How do you study the long-term outcomes for premature babies?

Dr. Guillory: Only 50% of our babies get follow up. [After discharging them,] we used to send them to the follow-up clinic, and we were through.

In terms of premature and neural development, [follow up] is crucial. [Unforunately,] there are not a lot of grants to do long-term follow-up studies.

A recent article by Jeffrey Hobar in Pediatrics uses the phrase ‘not only do you need to follow them up, you need to follow them through.’ I love that terminology.

He basically says that you have a responsibility to these babies.

When you have a 23 or 24-weeker, you work hands-on to save that baby; you are part of the decision making process.

You are part of this process, and you have an obligation to follow through. This means following through with the social determinants of health, making sure we’re sending them to a medical home where they will be taken care of, and their developmental milestones followed so that they don’t get lost.

We also need to make sure that they have a doctor who [will accept] their insurance.

As for babies born at less than 32 weeks, they have an increased risk of neurodevelopment impairment; cognitive, the way they think; motor, the way they walk; emotional with [things such as] autism; and behavioral with attention deficit hyperactivity disorder (ADHD).

Sometimes these things aren’t picked up until they are at school. And so, if you’re not able to follow them closely, you may miss an opportunity.

For example, the Texas AAP is fighting to make sure that the State legislators are investing the money that we need for Early Childhood Intervention (ECI).

One thing about taking care of premature babies is that you have to understand that your work extends beyond the hospital. We have to get out into the community, not only to work on the social determinants of health but also for ECI; that’s a legislative issue.

And so, you really have to work with legislators to make them understand how important these issues are.

Including parents in the discussion

MNT: How do you talk to parents of premature babies?

Dr. Guillory: When you speak to families, you must speak honestly. You must speak candidly with transparency. We really need to be open.

You can’t hide anything; you need to tell them what you know. Being culturally appropriate in our [communication] is important. So when I talk, I’m honest with them, I’m candid with them, I’m transparent with them.

Here, where we have such a diverse population, it’s important for us to communicate. If we do not facilitate the best communication, [the families] are not going to understand us.

So, for example, if I have a Hispanic family, I may need to bring an interpreter with me. And we need a really good medical interpreter. I need someone who knows my terminology.

Even up to today, I hate it. How do you tell somebody in another language that their child could die?

I really depend on other members of the team that are specifically trained to help. We have to be careful what we’re saying and how it’s interpreted; it has to be culturally appropriate when we’re talking to our families.

The other thing is that in a Family-Centered Care Unit as we have in Texas Children’s, it is important that the parents are part of the discussion.

So when we make rounds, they are our partners in this team. This is a team group, not me telling them what decision they’re going to make.

We make very serious life and death decisions every day, but the parents have to be in on it as partners. The premature journey in the NICU; you have good days, and you have bad days.

When we are talking to parents, we need to be there, always available to them. We have to be available during good times to talk to them, but especially in bad times. We need to make sure that we’re answering their questions and updating them when a baby really gets very sick.

They need to see we’re at the bedside 24/7, which we are in a Level 4 unit.

Supporting families during the pandemic

MNT: What can other family members do to support parents?

Dr. Guillory: That’s an interesting question. They need just to be there to support the parents the way the parents want to be supported now.

People can do different things, like transportation. But sometimes, the mom or dad may not want somebody else bringing them to the hospital. They don’t want them asking [a lot of] questions about their babies. I have a mom here who specifically told me [not] to give any information to anybody else.

Some of these [issues] are very personal. So I think you have to know your family. And family members should not be imposing themselves on them, but be there, just as family.

Be there to love them and listen to them, not always to give advice unless they ask for it. Be there in support of the family with whatever resources they need.

The parents usually will identify what they need. You need to be the resource they need and that they identify.

[COVID-19] has made that really challenging.

We had to impose very strict rules, sometimes with only one visitor allowed. Can you imagine how that affected our parents?

It was one of the first things that we changed [once we were able to.]

We have to be careful when we make these rules and decisions. We really need to understand not only how it impacts the whole hospital but how it impacts families.

MNT: How have your parents coped with the restrictions put in place for COVID-19?

Dr. Guillory: Being allowed to have two visitors is important. They don’t always need the extra family there because we can use zoom and video.

I wasn’t open at first to having everything we say being taped, but now it’s no problem.

Now, for example, we do rounds with one mom with grandmother [joining us by] video. We do all of these extra little things to give them the support to know that the family can be there.

In the [early stages of the pandemic], there were a lot of restrictions, and that was difficult. Once we were able to change it to two visitors, it was a lot better.

[Interestingly,] nobody complained about the siblings not being able to come in. [Before the pandemic], we had a sibling group taking care of the siblings. They would come in, and we would talk to them about what to expect; we [even] had sibling classes.

All of this was in place before COVID-19, and I can’t wait to get back to that again.

‘Who’s going to speak for them?’

MNT: What public health measures or interventions will make a difference to the social determinants of health that affect prematurity?

Dr. Guillory: When I started working in pediatrics, [I knew] my heart was there.

And then, in pediatrics, the one that touched me the most was the babies. When I [started] taking care of babies here in Houston, which has a Black population of about 14% maybe 15%, I [was] looking in the NICU, and almost all of the babies were Black.

My first thought was, why do we have so many Black babies in here, out of proportion to what I see outside?

That’s what started me on being interested in neonatology in the first place. These babies were extremely vulnerable. No one had a voice for them.

And so I remember saying, if ‘I don’t speak out for them, who’s going to speak for them?’ And that’s the way it began.

And it not only began in taking care of them and making sure I was the best neonatologist I could be, I wanted to be the best advocate I could be as well.

I did a Robert Wood Johnson health policy fellowship and congressional fellowship. I took a sabbatical and went to D.C. I wanted to learn about how Medicaid works for them, how I can improve access to care for them, and how I can address the fact that Black babies are carrying the burden of mortality.

That was the beginning of identifying the problem. Then, when I came back home, I realized that I didn’t know enough.

So I went to graduate school to get a master’s in public health. I worked on it for maybe 6 to 8 years, taking one class a semester while working on the unit.

I took classes on disparities and ethnicity and [on how these] affect health outcomes. I started to look at access to care, particularly access to prenatal care.

If you don’t have prenatal care, then you can’t pick up the [risk factors, such as] diabetes and hypertension, and you can’t pick up that the baby is not growing well. Prenatal care was very critical in leading to premature births in the African American community in Houston. That was [the topic of] my thesis.

The other factor that I looked at was nutrition, particularly the importance of fruit and vegetables and how diet and obesity factor into prematurity.

I looked at what else I could do in the community. And that’s when I started working in a church environment.

I worked on developing the Honey Child Project [which aims at decreasing] prematurity in the African American community. We [set this up] in two large churches in Houston.

We had prenatal classes. We had nutrition classes. We took the mothers out to go grocery shopping. Of course, it needed to be culturally sensitive [for example, suggesting appropriate food swaps].

For moms on [the Supplemental Nutrition Assistance Program (SNAP)] who had a card to buy vegetables, we looked at which stores to go to. If stores had poor vegetables, we reported them to the State, saying this is unacceptable.

Now you see fresh fruit and vegetables at Target and all these places that [the moms go to] shop.

Often when people get grants and set up projects in the community, they leave once the funding runs out. Then you leave the community not trusting anymore. When you set up a program in a church setting, it becomes a mission of the church.

So we developed a village. We had real nutritionists helping us. We had teachers for our young moms and college students who addressed their options for having a baby and going to school.

We had people who work with the city of Houston in housing to make sure they had the best housing possible that was available in their area. We had a mentor for each [mom]. We had exercise classes, teaching them how to reduce stress.

With the Honey Child Project paying attention to those social determinants of health, we reduced the prematurity rate from 18.7% at the start to less than 10% in the African American community.

Having a premature baby is a ‘journey’ 

MNT: I imagine that your job is probably one of the toughest jobs in the world.

Dr. Guillory: I think you just have to have strong faith, personally, to be able to do this on a daily basis.

We have a really good unit at Texas Children’s. The one thing that I see that is always comforting to me is when a mom says goodnight and knows she can walk away and that her baby is being taken care of.

When I see a mom that can’t leave, and she is sleeping here day and night, then it’s our job to make sure that she knows [she can trust us.] That may not be us telling her; that is something that she has to see. So, we may have to work a little harder with that mom.

It’s a journey to have a premature baby that may be in the hospital for 3 or 4 months. You’re going to have some really good days, you’re going to walk up and see some smiles, and then you’re going to walk up and see tears. We have to adjust to that.

MNT: What do you wish for parents with premature babies to know?

Dr. Guillory: The one thing I want them to know is they have a team of people, doctors and nurses, and that they are also part of that team.

[The whole team] wants to give their child the best possible medical care technologically available. But they also want the best possible outcome for the child. And that’s what we work at day and night.

There are people that are pulling behind them, that will walk with them through this very difficult walk. They’ll have that support from their medical team.

MNT: Is there anything else?

Dr. Guillory: I wrote an article 10 years ago. In it, it says, ‘I see on a daily basis the complications of being born prematurely. As physicians, we have to do more.’

[10 years later], I am saying the same thing.

MNT: I bet that you are doing all you can.

Dr. Guillory: Yes, but it’s not enough. If you still see these babies that are dying, then it’s not enough.

A tireless advocate

Surprisingly, we managed to get through the whole interview without either of Dr. Guillory’s on-call phones ringing.

From speaking to Dr. Guillory, it is clear how deep her passion for caring for premature babies runs. She is a tireless advocate for babies, mothers, and their families, working towards the best possible long-term outcomes for premature babies.

With that, Dr. Guillory left to return to the ward to look after the small babies in her care.

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