This article is sponsored by Prolacta Bioscience.

When Leslie Hoops was induced at 33 weeks due to severe preeclampsia, she could only think at that moment whether her son would be delivered healthy. She wasn’t thinking about what would happen next, or what decisions would need to be made. But as soon as her son was born, those questions and decisions came quickly.

Leslie’s son was born with Duodenal Atresia, a congenital condition where a blockage occurs at the first part of the small intestine, known as the duodenum. Duodenal Atresia is usually detected during a prenatal ultrasound when excess amniotic fluid and a “double bubble” appearance indicate fluid in the stomach and duodenum.

Only a week after his diagnosis, Leslie unexpectedly delivered her son due to her worsening preeclampsia. Now she was being asked to process unfamiliar medical information and make decisions about their son’s care – regarding both the Duodenal Atresia and his prematurity. And like many NICU parents, Leslie and her partner were navigating these conversations while recovering from an unexpected delivery and coping with the fear and uncertainty of having a critically ill newborn.

This is where informed consent becomes especially important. Informed consent is the process in which a healthcare provider educates a patient about the risks, benefits, and alternatives of a proposed procedure or treatment.

What Does Informed Consent Mean?

Informed consent is more than signing a form or giving permission for a procedure. The concept of informed consent involves three key components:

Disclosure: The provider must give the information in clear, layperson terms. This information needs to include:

• Diagnosis
• The proposed treatment
• The potential risks and benefits
• Any alternative treatment options and their risks and benefits
• The consequences if the patient chooses not to undergo the treatment 
• Providers also need to give families the opportunity to ask questions and participate in conversations and decisions about their baby’s care 

Capacity: The patient must have the mental ability to understand the information and make a rational decision.

Voluntariness: The decision must be made freely, without manipulation, coercion, or undue influence.

Informed consent helps parents feel informed, supported, and included in decisions about their baby’s care, an essential part of the NICU experience.

What Informed Consent Looks Like in the NICU

In the beginning, Leslie admits she was afraid to ask questions. She genuinely didn’t know where to begin. She was swirling in a haze of exhaustion from postpartum recovery, pumping, and still reeling from the fear and anxiety of her son’s early delivery. It was difficult to process any kind of complex information. “It felt like my brain was in slow motion while everyone was rushing around me,” she said.

There were many times Leslie felt as if she was being asked to make big medical decisions before she fully understood what was happening. In those times, she remembers the NICU staff taking great care to walk through complex information and help her understand the decisions before her. 

Her neonatologist drew her a picture to show how an NG tube would work to “feed” her son’s duodenum so they could rule out pyloric stenosis. He illustrated the problem they were trying to solve and how the tube could help. 

And whenever Leslie asked for something to be explained again, the staff was patient and kind as they continued to make sure she understood.

Ultimately, the path of informed consent always started with having a conversation, followed by Leslie asking any followup questions. She would then read through the consent documents to make sure she fully understood any procedure before agreeing. Leslie gives credit to the medical staff for ensuring she was an active participant in her son’s daily care and in the decisions that affected his progress. 

Understanding Your Baby’s NICU Care Through Research

Leslie didn’t fully understand what Duodenal Atresia was before her son’s diagnosis. Now she was trying to understand an unfamiliar condition while also processing information about procedures, risks, and decisions related to her son’s care. 

“I did my own research because there were risks and procedures and words I didn’t understand,” she said. 

As her son’s NICU stay progressed, Leslie began learning an entirely new medical language  – terms like “Replogle tube,” a tube used to remove air and fluid from the upper digestive tract, and phrases like “to gravity,” meaning active suction is turned off while the tube remains in place to allow fluid to drain naturally.

Understanding this language was more than a matter of becoming familiar with the NICU. It helped Leslie better understand her son’s care, ask informed questions, and participate more fully in decisions. Her experience also illustrates an important challenge of informed consent in the NICU: Parents may be asked to consider complex procedures, risks, and treatment options while they are still learning the language being used to explain them.

Questions to Ask Before Giving Informed Consent

Leslie had three primary questions that helped her feel empowered when giving consent: 

1. “Will this option affect my son long term?” 
2. “Are there any alternatives?”
3. “Why is this option the best?” 

These questions helped give Leslie direction as she dived deeper in being informed about her son’s medical decisions. Overall, Leslie felt her decisions were respected. 

Informed Consent in the NICU: Leslie’s Advice for Parents

Keep asking questions.

Whenever Leslie didn’t understand something, she didn’t hesitate to ask. And when she asked for something to be explained again, the staff was patient and kind as they continued to make sure she understood.

It’s okay to press pause.

When she was being asked to make big medical decisions before fully understanding what was happening, Leslie would ask, “May I take a moment?” This allowed her more time to think and process the situation at hand. “I had to trust myself that I was making the best choice for my son,” she said.

Advocate for yourself and your baby.

Once you have asked questions, gathered the information you need, and understand the available options, you can make the decision you feel is best for your child. “It was my job to make sure his little voice was heard,” Leslie said.

NICU parents may not always feel prepared for the complex decisions placed before them. They may be learning unfamiliar medical terms while recovering from birth, coping with uncertainty, and trying to understand what their baby needs. But parents should feel informed, included, and supported throughout the decision-making process.

Informed consent does not mean parents have to become medical experts or navigate difficult decisions alone. It means receiving clear information, having opportunities to ask questions, understanding the available options, and being given the time and support needed to participate meaningfully in decisions about their baby’s care.

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Every feeding journey is unique – just like your baby.

In partnership with Legendairy Milk.

When your baby is in the NICU, feeding may look very different than you imagined. You may have pictured breastfeeding immediately after birth, bottle feeding in a rocking chair, or bringing your baby home after just a few days. Instead, you may find yourself learning about feeding tubes, pumping schedules, donor milk, or specialized feeding plans.

No matter what your feeding journey looks like, one thing remains true: there is no right or wrong way to nourish your baby.

Your baby’s medical needs, gestational age, and development all play a role in how they are fed. Some babies breastfeed right away. Others need expressed milk through a feeding tube, donor milk, formula, or a combination of methods before they are ready to feed by mouth.

The NICU is a journey, and feeding your baby in the NICU is part of that journey. Give yourself permission to learn alongside your baby, celebrate each step forward, and know that your care team is there to support you every step of the way.

There is no “perfect” feeding journey

Every family’s experience is different, and every baby has different nutritional needs. Your care team will help determine the feeding plan that’s best for your baby. Along the way, remember:

• There is no right or wrong way to feed your baby.
• Pumping in the NICU can be physically and emotionally demanding. Your lactation consultant, speech therapist, nurses, and other members of your care team are there to answer questions and help troubleshoot challenges.
• Patience is key. Feeding is a skill that both you and your baby are learning together.
• Celebrate every milestone, no matter how small. Each pumping session, successful latch, bottle feeding, or increase in feeding volume is a step forward.

Growing together

Feeding is about more than nutrition. It is also an opportunity to build connection, comfort, and trust between you and your baby.

Even if your baby isn’t feeding at the breast or by bottle yet, there are many ways to nurture your bond while supporting your feeding goals.

Be present

During feedings, spend time looking at your baby. Talk, read, or sing softly. Your voice is familiar and comforting, and these quiet moments can strengthen your connection.

Connect

If your baby is receiving milk through an NG tube or another feeding method, ask whether you can hold them during feedings.

Skin-to-skin care (kangaroo care) can help support milk production while also helping babies and parents recognize feeding cues.

When you’re away from the NICU, looking at photos or videos of your baby while pumping may also help encourage milk let-down and keep you connected.

Support

Simple routines can make pumping feel a little easier. Some families find that using scent cloths—a cloth that carries their baby’s scent—helps stimulate milk let-down, especially when pumping at home.

Understanding donor breast milk

If your baby’s care team recommends human donor milk, you may have questions or mixed emotions.

What is human donor milk?

Human donor milk is breast milk donated by lactating mothers through an accredited milk bank. It is carefully screened and processed before being provided to babies who may benefit from it.

Why might my baby receive donor milk?

Your baby’s doctors, nurses, and lactation consultants can explain why donor milk is being recommended, the safety measures in place, and how it fits into your baby’s care plan. Every NICU has protocols for when donor milk is used, so don’t hesitate to ask questions.

It’s okay to have mixed feelings

Many parents feel grateful that donor milk is available while also grieving that they cannot provide all of the milk they hoped to. Both feelings can exist at the same time.

Remember, donor milk is simply one possible part of your baby’s feeding journey. Feeding your baby with love, regardless of the method, is what matters most.

Caring for yourself while caring for your baby

Feeding your baby in the NICU can be physically exhausting and emotionally overwhelming. Caring for your own mental health isn’t separate from caring for your baby. It’s an important part of the journey.

Consider ways to care for yourself throughout your NICU stay:

• Join a support group at your hospital or online. Hand to Hold offers weekly virtual support groups for all stages of the journey.
• Take a walk when you need a mental reset.
• Journal about your thoughts and emotions.
• Read a favorite book or watch a comforting show.
• Practice positive self-talk and remind yourself that you are doing your best.
• Avoid comparing your journey to anyone else’s.
• Celebrate every milestone, both yours and your baby’s.
• Lean on trusted friends, family members, or your support system.
• Remember that asking for help is a sign of strength—not weakness.

Every step forward matters

Feeding your baby in the NICU may not look the way you expected, but every ounce pumped, every feeding, every cuddle, and every milestone is part of your family’s story.

Whether your journey includes breastfeeding, pumping, donor milk, formula, or a combination of feeding methods, know that you are nourishing your baby with both nutrition and love. Be patient with yourself, ask questions, celebrate the small victories, and remember, you don’t have to navigate this journey alone.

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Guest: Darnell Lamont Walker

Death Doula

In this episode:

• Identify and describe at least three core functions of a death doula
• List two communication strategies that support families experiencing neonatal loss or end-of-life transitions
• Describe two practical interventions to support families’ grief journeys

CLAIM CEU

About Darnell Lamont Walker

Darnell Lamont Walker is a death doula, Emmy-nominated children’s television writer, producer, and explorer. Born in Charlottesville, Virginia, he creates spaces worldwide for healing through storytelling, end-of-life care, and workshops on grief, resilience, unlocking the writer within, and radical empathy. He joyfully lives in the Chattahoochee National Forest of North Georgia.

 

 

 

 

 

 

 

 

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Disclosures

This podcast episode is approved by the California Board of Registered Nurses, Provider Number 15417, for up to 1 contact hour.

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