Understanding What Matters Most to NICU Families

Dear NICU Parent or Caregiver,

We are Zina Yudina, PhD, Babylat and Mary Coughlin, MS, NNP-NCC-E Caring Essentials, two professionals who work closely with families and clinicians in neonatal and pediatric care. Together, we are exploring ways to support the nutrition, healing, and well-being of babies who require intensive medical or surgical care — including those born prematurely and those facing medical complexities.

We know that feeding decisions in the NICU are deeply personal, often emotional, and shaped by your baby’s unique needs. We also know that parents hold powerful insights into what feels safe, meaningful, and aligned with their values.

We are gathering parent perspectives on a new concept: gently concentrating a small portion of a parent’s own milk (or donor milk when needed) to create a human-milk–origin fortifier. This idea aims to support growth and healing while keeping your baby’s nutrition as close to fully human-milk–based as possible.

This short survey simply asks how you feel about this concept.

Your participation is:

completely voluntary
anonymous
will not affect your baby’s care in any way

Our only goal is to better understand parent experiences, preferences, and values so that future innovations in neonatal nutrition are grounded in the voices of the families who live this journey.

For the sake of transparency, we may share the overall, anonymous findings in a publication or professional setting to help highlight what matters most to NICU parents and to support ongoing improvements in infant nutrition. No individual responses or identifying information will ever be shared.

Thank you for your time, your voice, and your care. Your perspective truly matters — to us, and to future families.
With gratitude,
Zina and Mary

Demographics Section

To help us understand different family perspectives, please answer a few optional background questions.
All of these questions are optional and your answers are anonymous.

Question Title

* 1. Where are you located?

Question Title

* 2. What best describes your baby's hospital journey? (Select all that apply)

Born prematurely

Born at term with medical needs

Required surgery

Feeding or growth challenges

Other (please specify)

Question Title

* 3. What best describes your baby’s current situation? (Choose the one that feels right for you.)

If you are a bereaved parent, please know we are deeply grateful that you are choosing to share your voice.

My baby is still in the NICU/PICU

My baby is home (less than 1 year old)

My baby is home (1 year or older)

My baby has died, and I am answering in their honor

Prefer not to say

Question Title

* 4. During your baby’s hospital stay, what feeding types were used? (Select all that apply)

Expressed milk from the birthing parent

Donor human milk

Cow-milk–based fortifier

Human-milk–based fortifier

Formula

I’m not sure

Section 1 — Your Feeding Values

Question Title

* 5. When thinking about feeding your baby in the NICU, which statements feel true for you (check all that apply)

I prefer using my own milk as much as possible.

I prefer using donor human milk over formula if my own milk isn’t available.

I prefer to avoid cow-milk–based products if possible.

I trust my NICU’s guidance on feeding decisions.

I want more human-milk–based options for preterm babies.

Question Title

* 6. How important is it to you that your baby receives human milk whenever possible?

0 = Not Important

10 = Extremely Important

Clear

i We adjusted the number you entered based on the slider’s scale.

Section 2 — Your Awareness of Fortification

(NOT asking about medical knowledge; just perceptions)

Question Title

* 7. Before today, were you aware that preterm babies usually need added protein to grow and develop?

Yes

Question Title

* 8. Before today, did you know that the most commonly used human milk fortifiers come from cow’s milk?

Yes

Section 3 — The Concept: Concentrating a Parent’s Own Milk

Some hospitals are exploring whether it’s possible to take a small portion of a parent’s milk, gently concentrate the nutrients, and use that concentrated milk as the fortifier — creating a 100% parent-milk–based approach.

Question Title

* 9. How do you feel about this idea?

Very positive

Positive

Neutral/Not sure yet

Some concerns

I would not support this idea

Question Title

* 10. If you feel unsure or have concerns, what are they?

Question Title

* 11. If this option were available, which best describes your preference for your baby?

I would prefer fortification made from my own milk

I would prefer fortification made from donor human milk

I would prefer standard cow-milk–based fortifiers

I’m not sure

It depends (please explain)

Section 4 — Practical Considerations

Question Title

* 12. Parents have different milk journeys, and all are valid. If this option were available, how would you feel about having the choice to use a small portion of any amount of your milk (when available) to create a human-milk fortifier for your baby?

I would welcome this option

I would consider it

I’m not sure yet

I would prefer not to

I’d like more information before deciding

Question Title

* 13. How much extra effort (if any) would you be willing to invest to help make this option possible?

No extra effort

A little extra effort (e.g., one additional pumping)

Moderate effort

As much as needed

I don’t have enough milk to give extra

Section 5 — Final Feedback

Question Title

* 14. In your gut, does this idea feel (select all that apply)

Empowering

Reassuring

Neutral

Concerning

Confusing

Other (open text)

Understanding What Matters Most to NICU Families

Question Title

* 1. Where are you located?

Question Title

* 2. What best describes your baby's hospital journey? (Select all that apply)

Question Title

* 3. What best describes your baby’s current situation? (Choose the one that feels right for you.)If you are a bereaved parent, please know we are deeply grateful that you are choosing to share your voice.

Question Title

* 4. During your baby’s hospital stay, what feeding types were used? (Select all that apply)

Question Title

* 5. When thinking about feeding your baby in the NICU, which statements feel true for you (check all that apply)

Question Title

* 6. How important is it to you that your baby receives human milk whenever possible?

Question Title

* 7. Before today, were you aware that preterm babies usually need added protein to grow and develop?

Question Title

* 8. Before today, did you know that the most commonly used human milk fortifiers come from cow’s milk?

Question Title

* 9. How do you feel about this idea?

Question Title

* 10. If you feel unsure or have concerns, what are they?

Question Title

* 11. If this option were available, which best describes your preference for your baby?

Question Title

* 12. Parents have different milk journeys, and all are valid. If this option were available, how would you feel about having the choice to use a small portion of any amount of your milk (when available) to create a human-milk fortifier for your baby?

Question Title

* 13. How much extra effort (if any) would you be willing to invest to help make this option possible?

Question Title

* 14. In your gut, does this idea feel (select all that apply)

Question Title

* 15. What matters most to you when thinking about nutrition for your preterm baby?

* 3. What best describes your baby’s current situation? (Choose the one that feels right for you.)

If you are a bereaved parent, please know we are deeply grateful that you are choosing to share your voice.