What Are Your Rights as a NICU Parent?
At FLRRiSH, we believe an educated mom is an empowered mom, and that starts with understanding your rights as a NICU parent.
You and you alone know what’s best for your child. In a perfect world, we’d be able to put our blind faith into every therapist, specialist, and care provider. But sometimes, reality is more complex. Don’t get me wrong–NICU professionals are incredibly trustworthy and absolute angels of human beings. But there may be times when you need a second opinion, feel an issue isn’t getting the attention it deserves, or sense something has been overlooked.
That’s why it’s important to understand the authority you hold as a parent. Where exactly can you intervene? What decisions are yours to make? This knowledge will equip you to provide the best care possible for your child.
In this article, we’re covering your legal (and moral) rights as a NICU parent and providing resources so you can become the most powerful and informed advocate for your baby.
Legal Rights as a NICU Parent
Let's start with the legal side. Your rights as a NICU parent may vary from state to state, so I recommend taking a look at your specific state’s Parent Bill of Rights. For the purpose of this article, I’ll be referencing New York State’s. [1]
Right to Participate in Care Decisions
As a parent in the NICU, you have the right to be involved in decisions about your baby’s care.
This includes:
Discussing treatment options and medical interventions with the NICU team. [2]
Participating in life-support and intervention discussions. [2]
Requesting to join nurses during rounds so you can stay informed and engaged in your baby’s care. [3]
Receiving a comprehensive discharge plan with verbal and written instructions and a contact number for any post-discharge concerns. [1]
Right to Visitation
You have the right to visit your child as soon as it is medically safe. Additionally, at least one parent or guardian can remain with your child at all times, depending on their health and safety needs. [1]
If you’re wondering what “medically safe” means, I’ll give you an example. After I gave birth to my daughter prematurely, my blood pressure was dangerously high, and I was experiencing hallucinations from the medication I was given. Due to my condition, I wasn’t able to see her right away.
A few days later, I became stable, and they brought me to her. Even though I was allowed to visit my daughter, I wasn’t able to hold her because she was still extremely fragile. How soon you can hold your baby often depends on their condition and the assessment of NICU staff. In the meantime, you’ll be able to touch your baby through the incubator and talk to them until it’s safe to hold them.
As far as visitation rights for friends and family go, be sure to check with your individual NICU for their specific guidelines.
Right to Confidentiality
HIPPA protects patient information. Your child’s medical information cannot be disclosed or used without your written consent except when required by law. Without authorization, your provider cannot sell their information or use it for marketing or advertising purposes.
While this may not be a top-of-mind issue, it’s worth knowing about!
Access to Medical Records
As a NICU parent, you have the right to request information about your child’s diagnosis and care plan at any time. This includes diagnoses or possible diagnoses that were considered during an episode of care and potential complications that could develop. [1]
Note: Some hospitals may have specific procedures for accessing electronic medical records, but you should be able to review them upon request. [2]
Informed Consent
You have the right to understand any procedures, medications, or potential risks in your child’s care.
Informed consent involves four key elements:
Clear information
An assessment of your understanding
An evaluation of your capacity to make decisions
The freedom to choose
Medical teams should explain everything in an accessible way, empowering you to make informed choices for your baby. [4]
In other words, it’s not just about letting you make the decisions. It’s about ensuring that you are as informed as possible so you can make the best decisions.
Moral Rights and Parental Dignities in the NICU
While your moral rights in the NICU are a little less black-and-white, they are no less important. They’re also essential to creating a supportive and positive environment for you and your family.
Right to Have Your Concerns Heard
As I mentioned at the beginning of this article, most NICU doctors deserve our complete confidence and trust. But if you feel your concerns aren’t being taken seriously, remember that:
It’s okay to disagree with your provider. Trust your intuition, and don’t hesitate to seek a second opinion.
Sometimes it helps to speak with someone close to you. Discussing your concerns with a loved one can provide clarity or help you find a solution.
You should continue advocating for yourself. Whether it’s finding alternative perspectives or supportive communities, it’s important to keep exploring options that make you feel empowered.
Tip: Writing down your questions in advance can help ensure that your voice is heard and your concerns are addressed fully.
Right to Feel Empowered and Trusted
Parents should feel like valued partners in their baby’s care. They deserve the chance to learn about medical decisions, participate when possible, and feel confident in their role, even if they cannot physically be the ones providing care all the time.
Knowing you have a say in key decisions strengthens your bond with the NICU team and helps you feel more like family.
Right to Feel Safe and Supported
You have the right to feel safe and supported by the NICU staff. This means receiving compassionate, consistent care from the medical team and being encouraged to participate in activities that boost your morale, like kangaroo care. While staff may have limitations in offering emotional support, they should connect you with helpful resources when needed.
Where to Find More Information on NICU Parent Rights
Here are some steps you can take to further educate yourself on your rights as a NICU Parent:
Speak to NICU Staff: Ask your NICU team about any patient rights resources and policies available to parents.
Request a Parent Handbook: Some NICUs offer handbooks detailing policies, visitation rules, and parental involvement guidelines.
Check Online Resources: Organizations like the March of Dimes, Hand to Hold, and NICU Parent Network offer NICU advocacy resources, emotional support, and detailed information about your rights. In fact, NPN created a helpful NICU Baby’s Bill of Rights, which you can access here.
Connect with Other NICU Parents: Support groups, either in person or online, can connect you with other NICU parents who have experience advocating for their children.
Work with FLRRiSH: FLRRiSH is a peer-support program where you can connect with me, a fellow NICU mom, to help you navigate all aspects of your postpartum journey through the NICU and beyond.
Disclaimer: This article is for informational purposes only and does not constitute legal advice. If you have specific questions about your rights as a NICU parent, please consult a qualified legal professional.
Sources
1. New York State Department of Health. "Parent’s Bill of Rights." New York State Department of Health, 11/17. Available at: https://www.health.ny.gov/publications/1470.pdf. Accessed 9 Nov. 2024.
2. Hampton & King Attorneys at Law. "What are My Rights as a NICU Parent?" Hampton & King Attorneys at Law. Available at: https://www.hamptonking.com/blog/what-are-my-rights-as-a-nicu-parent/#:~=But%20you%20have%20the%20right,information%20should%20be%20kept%20confidential. Accessed 9 Nov. 2024.
3. Sari Ahlgvist-Bjorkroth, Ylva Thernstrom Blomgvist, Jenni Nyberg, Erik Normann, Anna Axelin. "Improving NICU Staff Decision-Making with Parents in Medical Rounds: A Pilot Study of Reflective Group Dialogue Intervention." National Library of Medicine, 12 Sept. 2023. Available at:https://pmc.ncbi.nlm.nih.gov/articles/PMC10523391/#:~=Care%20in%20neonatal%20intensive%20care,parental%20participation%20in%20decision%2Dmaking. Accessed 9 Nov. 2024.
4. Richard W.I. Cooke. "Good Practice in Consent." Seminars in Fetal and Neonatal Medicine, vol. 10, no. 1, 2005, pp. 63-71. Available at:https://www.sciencedirect.com/science/article/abs/pii/S1744165X04000617#:~=Summary,European%20neonatal%20units%20is%20described. Accessed 9 Nov. 2024.
