Rights as a NICU Parent

When your baby is in the neonatal intensive care unit (NICU), you might feel incredibly overwhelmed, stressed, and sad. Having your baby whisked away from you shortly after birth can be devastating – even more so when you are worried about their health. When you get to the NICU and have to deal with rules and restrictions, it can be even more upsetting.

NICU rules – like gowning, masking up, and hand washing – exist to protect vulnerable newborns. Yet they can often feel onerous, particularly when you want nothing more than to take your baby home. Fortunately, parents do have certain rights when their baby is in the NICU – including the right to participate in care decisions and give informed consent to procedures, medication, and more.

At the Birth Injury Lawyers Alliance (BILA), we know that a NICU stay can be difficult, even when you know that it is the best place for your baby to be. If you believe that your baby is in the NICU because of a preventable medical error, reach out today to schedule a free consultation with a birth injury lawyer in your province.

NICU Parents’ Rights 

When your baby is taken to the NICU, you will quickly learn a whole new language and way of existing. In the NICU, your newborn can receive specialized medical care such as feeding support, oxygen and breathing support, cooling therapy, and more. They will be closely monitored and given round-the-clock care to help them thrive.

The NICU also tends to have a lot of restrictions on parents. Depending on the hospital policy, visitors other than parents may be strictly limited. Parents can usually visit the NICU freely but may have to wash their hands and/or don a mask, gloves, and gown to prevent the spread of respiratory infections. Parents might not be able to hold or feed their babies and may even be restricted in how much they can touch their infants. Parents also can’t take their babies home until they have been discharged from care.

In this situation, it can be easy to feel like you have absolutely no rights as a parent. However, parents DO have rights when their baby is in the NICU. This includes the following rights:

• Informed Consent: in a medical context, informed consent means that a patient voluntarily agrees to a medical procedure after receiving a clear explanation of its risks, benefits, potential complications, and alternatives. In the NICU, parents have the right to be informed about the procedures and medications that the staff want to perform on or administer to their child. NICU medical providers should explain this information in a way that you can understand so that you can make an informed decision about your infant’s care.
• Participation in Care Decisions: NICU parents have the right to participate in discussions about their baby’s medical care and treatment options. They can also make decisions about any interventions – including life-saving interventions – that they may or may not want for their child. While you might not be able to overrule the decisions of the NICU healthcare providers if doing so would be dangerous to your baby, you absolutely have the right to be involved in discussions about how to treat your baby.
• Access to Medical Records: while each hospital will have its own policies and procedures for requesting medical records, as a parent, you have a right to obtain your child’s medical records. This documentation might be important in the event that you file a medical negligence lawsuit if your child suffered a birth injury.
• Privacy: just as your medical information must be kept confidential, your baby’s records should also be kept private. 
• Visitation: depending on your child’s medical condition, it might not be possible to see them right away. This can be scary and frustrating, especially when you aren’t sure of what is happening with your child. While you might not get to see your baby immediately, you will have the right to visit them as soon as it is safe. You can ask the NICU staff about visiting hours and policies so that you know what the rules are when the time comes. You can also ask about when you will be able to hold and touch your baby if it isn’t safe to do so immediately.
• Feeding: babies in the NICU aren’t always capable of attaching, suckling, or otherwise being fed by mouth. As a parent, you have the right to choose whether to feed your baby formula or breast milk. You also have the right to get support for breastfeeding or pumping. While you may not be able to feed your baby directly right away, the important decisions about what your baby eats will be made by you.
• Support: having a baby in the NICU can be incredibly stressful. NICU parents have the right to get support – and should take advantage of any services that the NICU offers for their physical and/or emotional health. Many hospitals offer programs like support groups, counseling, social workers, and/or hospital chaplains to help parents.

Importantly, while parents do have the right to make medical decisions for their children, that right is not unlimited. In Canada, all children have a basic right to healthcare.

Questions to Ask The NICU Staff

Often, when a baby is in the NICU, their medical condition is complex. It can often be hard to understand – and doctors and other medical providers don’t always do the best job of conveying necessary information. For example, if your baby suffered oxygen deprivation during labour and delivery (birth asphyxia), then the doctors might recommend cooling therapy – but you might not quite understand the purpose of this treatment or what it means for your baby’s prognosis.

At the same time, NICU parents are often exhausted and sleep-deprived – as any new parent may be, but multiplied by the stress of your baby needing specialized medical care. If a doctor or nurse asks them if they have any questions, they might not know where to start.

Keeping a notebook with you – or simply opening up the notes app on your phone – can be a good way to keep a clear head about what is happening with your baby. You can write down any questions as they occur to you and then write down any answers that you get from the staff. You can also keep notes of the medical providers who are providing care for your kids along with any information about procedures, medication, and equipment.

Each NICU stay is a bit different. However, there are some questions that are applicable to many NICU patients. You might want to ask the NICU doctors and nurses:

• What is my baby’s diagnosis?
• Do you know what caused this condition?
• What is their prognosis?
• What is the goal for my baby’s NICU stay?
• Why did you prescribe this medication?
• Why is my baby’s treatment being changed?
• Can you tell me my baby’s current vital signs?
• Why does my baby need this procedure?
• What do the lab tests or imaging show?
• How will my baby’s progress be monitored?
• How will I be updated about my baby’s progress?
• What tests or procedures will my baby undergo over the next few days?
• Is there a milestone that my baby has to hit in order to go home?
• Why does my baby need a feeding tube?
• Why does my baby need a ventilator or oxygen?
• How will I know how my baby is doing? Are there signs to watch for when I am here?
• Can you explain this equipment that my baby is connected to?
• When can I hold my baby?
• Is there a type of touch that will be soothing to my baby?
• Is there anything I can do to help my baby, like singing or talking to them?
• Do you offer any support services for NICU parents?
• Is there anything that I can do to prepare for my baby’s transition home?

These are just some of the questions that you might find helpful when your baby is in the NICU. Remember – there is no such thing as a stupid question. You are not a medical expert, and no one expects you to be one. Having a baby in the NICU is scary, and the medical staff understands that. They are typically happy to answer questions and help you understand more about what is happening with your baby.

Help for Families

Too often, a baby ends up in the NICU after suffering a birth injury due to preventable medical negligence. Common birth injuries such as cerebral palsy and hypoxic-ischemic encephalopathy (HIE) are often caused by medical malpractice. In this situation, you might be able to file a lawsuit against the at-fault providers and hospital for your losses. 

The Birth Injury Lawyers Alliance (BILA) is dedicated to advocating for Canadian families whose children have suffered birth injuries. To schedule a free consultation with a birth injury lawyer in your province, give us a call at 1-800-300 2452 or fill out our online contact form.

Can I Take My Baby Home from the NICU?

Once your baby has been discharged by the medical team at the hospital, you can take them home. If your baby has not been discharged, you cannot take them home if doing so would put them at significant risk of harm. For example, if your baby has a serious medical condition and requires support to breathe, then the hospital and/or doctors may take steps to prevent you from leaving (such as contacting child protective services).

Having a baby in the NICU can be difficult and it is understandable that you might just want to go home. However, the neonatologists and other medical experts at the NICU are in the best position to determine when it is safe for your baby to go home with you. The hospital staff can also set you up with supportive services to ease the transition home.

When Can My Baby Leave the NICU?

The answer to this question will vary based on your child’s medical condition. At a minimum, doctors will require that your baby has stable vital signs and can eat, breathe, and maintain body temperature on their own before discharging them. They will also typically want your baby to be gaining weight and pass certain tests. Your baby’s NICU doctor can explain more about what they will need to see before discharging your infant.

Bringing a baby home from the NICU can be both scary and a relief. In the weeks and months that follow, you might consider whether your baby’s birth injury was caused by medical negligence. If you suspect that medical negligence might have caused their condition, reach out to BILA to talk to a birth injury lawyer in your province.