What Is The NICU Parent's Bill of Rights?

10 things NICU parents and nurses needs to know

Parents holding baby in NICU
BURGER/PHANIE/Getty Images

The Bill of Rights of the United States of America is a list of 10 amendments to the Constitution which were added in 1791. This list of 10 rights was added because many politicians felt that clarity was needed in order to better describe and protect individual liberties. Other politicians at the time felt the Bill of Rights was unnecessary, because these rights were assumed to be implied in the Constitution.

However, as history shows, clarity won and the Bill of Rights became a cornerstone of American government. The rights outlined within greatly shaped, and continue to shape, the fabric of our country. 

Fast forward 222 years to 2013, when another important (while admittedly less monumental) Bill of Rights came into being. The NICU Parent's Bill of Rights is another important document with lofty goals of helping to create clarity and protecting individuals. 

The Bill of Rights is a wonderful way for parents to understand what it is they can ask for and expect during their NICU stay. This list of 10 important considerations is also something that NICU staff should appreciate and try to honor when caring for the parents of their NICU patients. 

In a moment, we'll take a look at each of the 10 statements in the NICU Parent's Bill of Rights. But first, we must ask:

Why Do NICU Parents Need a Bill of Rights?

Babies who are born early, or who are born sick and fragile, need the kind of highly technical care that parents alone can't provide.

These babies need intensive care, and thus begins a family's journey with the Neonatal Intensive Care Unit.

This journey is one in which the parents typically have had very little education, very little preparation. It's emotionally so intense that it's hard for parents to step back and think about their bigger goals and dreams with their new baby.

Rather, parents tend to feel as if they have been dragged into a whirlwind of medical terminology and complex equipment, surrounded by staff who seem to know everything about their baby. It is very upsetting, to say the least.

Each NICU throughout the world is different, which means the support parents receive is also different from NICU to NICU. Some parents would never need a Bill of Rights to guide their NICU staff because they are wonderfully supported, included, and cared for. But unfortunately, other NICU parents experience very little support, feeling alone and confused about how they can bond and participate in their baby's life. 

Fortunately, a dedicated group of generous parents who have been through this experience stepped in to help. They know what it was like to be a parent of a NICU baby, and they know what they wish had been available to them when their babies were in the NICU.

Who Created the NICU Parents Bill of Rights?

In 2013, the Preemie Parent Alliance drafted this beautifully worded, carefully thought out document which highlights ten critical things to remember about what NICU parents are going through and how they deserve to be supported along the way.

This organization—PPA—is comprised of the thought leaders in the world of Preemie Parent support, so it's natural that this group of parents has the experience and the dedication to be able to create such an important document.

They created it based on the premise that family-centered care is the best mode of caring for babies and their families. Numerous healthcare organizations such as the American Academy of Pediatrics, the American Hospital Association, and many more support family-centered care as an important way to provide the best care for patients. And with good reason—numerous research studies have have shown positive benefits of family-centered care in the NICU.

These former NICU parents researched the issues that are important to NICU parents, drafted and edited, discussed and modified, until they arrived at a top ten list of the most important rights they believe all NICU parents should have recognized.

Unlike the Constitutional Amendments, however, this Bill of Rights does not have any official authority. NICU's are not required to agree to them, nor are they widely known. Yet. 

So it's up to individual parents and nurses, doctors and therapists, to learn more about it and find ways to implement it in their NICU. 

Now, let's take a look at each of the ten statements that comprise the NICU Parent's Bill of Rights:

The NICU Parent's Bill of Rights from the Preemie Parent Alliance

The Bill of Rights consists of these ten statements, as told from the perspective of the NICU baby:

1. My parents are my voice and my best advocates; therefore, hospital policies, including visiting hours and rounding, should be as inclusive as possible.

This opening statement highlights the fact that parents still struggle to be considered important members of a baby's care team. All too often, hospital policies of the past have been quick to remove parents from the NICU. While that can be vitally important in order for the NICU to provide safe care and family privacy, it all too often excludes families unnecessarily. And that exclusion is very damaging to parents bonding with their babies. So the first statement sets the tone of the entire Bill of Rights—a plea to include parents as much as possible. 

2. In order to be prepared to meet my needs when I am discharged, my parents need to understand my medical diagnosis. Be patient and teach them well.

This is a simple reminder to NICU staff—parents need a clear understanding of all medical diagnoses in order to best care for their babies. Sometimes doctors and nurses fail to recognize that parents do not, in fact, understand what is happening. 

3. Bonding is crucial for my development. Allow and encourage my parents to hold me as often as possible.

Every parent craves a strong and beautiful bond with their baby. The NICU disrupts that bonding, in many ways. Physical separation, lack of hands-on caregiving, grief, and worry all stand in the way of easy, natural bonding. So these parents and families need extra attention to helping that bond form.

Pioneering NICUs have become more willing to move babies from their very complex medical beds and place them skin to skin with their parents earlier and earlier, which helps parents feel connected. Research shows kangaroo care is beneficial.

4. Help prepare my parents to be my primary caregivers when I go home. Encourage them to participate in as much of my daily care as possible.

Caring for their baby is the most fundamental role parents have. When parents can not provide any cares whatsoever for their babies, it is incredibly demoralizing. With little effort, parents can be taught many of the routine cares that nurses provide. This item on the Bill of Rights is important not only for when babies go home, but it also helps with bonding during the NICU stay. 

5. Feeding helps my parents feel “normal.” Please allow them to feed me by bottle or breast, whichever is working best for me and my parents. Help reassure my mom it’s okay if she doesn’t produce milk.

When very little feels normal in the NICU, it's true that feeding a baby feels like an important parent activity, and it's very valuable as a part of the bonding experience. 

This one is really important for the NICU nurses to understand and implement. Some nurses can have a way of getting caught up in their heavy work load, often feeding babies themselves if it means their day will run more smoothly. And they don't mean harm, they just have a difficult and busy job to do.

But this Bill of Rights statement is an important reminder that feeding, while perhaps less efficient when done by parents, is vitally important in their bonding process. Whenever possible, it's important to reserve this event for parents.

6. If I, or one of my siblings, pass away while in the NICU, remember to continue to refer to us as multiples (twin/triplet/quads, etc.). It is important to my parents that you continue to honor and acknowledge each of our lives.

This request comes from parents who have gone through this tragedy themselves. They're letting everyone know the best way to handle this delicate situation.

Many times, people don't know how to be appropriately caring and sensitive about the death of a baby, even NICU nurses and staff. Nobody wants to further upset a grieving parent who has lost a child, so many times well-meaning people don't bring up the topic, hoping to avoid further emotion.

But parents say time and again that they prefer to have their loss acknowledged. They never forget their baby, and they feel added grief when everyone around them seems to have forgotten. So please go ahead and remember to mention the baby who died - they appreciate it. 

7. Although I may be a late-term preemie, the NICU can still be a very traumatic place for my parents. Ensure they receive just as much TLC, information, education and as many resources as the parents of my micro-preemie friend.

This is a wonderful reminder to extend the same care and concern for all parents, regardless of the length of their NICU stay or the severity of their infant's condition. Even though a baby may have a stable and relatively easy time in the NICU, their parents are still overwhelmed, scared, and deserving of attentive care. 

8. Encourage my parents to attend care conferences and schedule them regularly. They are a vital component of Family-centered care and they help educate my parents about my progress and long-term prognosis.

What is a care conference? It is a meeting for NICU parents, NICU nurses, doctors, therapists, and anyone else who is involved in the care of the baby. This is an opportunity for everyone involved in the baby's life to discuss what's going on and what plans are for the future. 

Unfortunately, some NICU parents are never offered the opportunity to have a care conference, and without that inclusion in the decision-making process, parents are left feeling like bystanders in their baby's life. 

Care conferences give parents their rightful place on the team, as a valued individual who cares deeply for the patient, who is and will be vitally important to the life of the child. 

9. My parents have the right to know all about me. Let them have open access to my medical records and encourage their questions.

Unfortunately, parents are often denied access to in-depth records of their baby's care. And while many parents don't care to receive them, those parents who do wish for it should absolutely have access to them. 

It is generally considered best practice to for non-medically trained individuals to review records with a member of the health care team present, in order to help explain what is contained within the records. In fact, some hospitals require this. Why? The unique method of medical and nursing charting, along with technical medical terminology, may cause confusion and possible frustration if read without any insight and guidance. (What if you are denied access to your records?)

10. My parents are experiencing a range of challenging emotions. Please be patient, listen to them, and lend your support. Share information about resources such as peer-to-peer support programs, support groups and counseling, which will help reduce PTSD, PPD, anxiety and depression.

The NICU is really, really hard on parents. Even though the primary NICU's job is to care for the baby, the truth is that the NICU staff are also the most appropriate ones to make sure the parents are remaining healthy and safe through it all. Why? Because the risks of postpartum depression, PTSD and more are very real, and the NICU staff are interacting with the parents on a daily basis. This makes them optimally positioned to intervene and help parents get the help they need. 

Many NICU's do not have adequate training for their staff as far as providing emotional care and check ups for parents. This final statement in the Bill of Rights is a plea for NICUs everywhere to recognize their role, and to provide care and resources to their other patients—the parents. 

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The PPA is happy for individuals and NICU's to print and display their NICU Parent's Bill of Rights. Feel free to download your own copy, or contact PPA if you would like to further discuss the NICU Parent's Bill of Rights use in your facility. 

[The NICU Parent's Bill of Rights was copied here with permission of PPA, May 2016]

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