Introduction
Welcome to The Empowering NICU Parents’ Podcast, a podcast dedicated to supporting, educating, and empowering parents navigating the challenges of having a baby in the NICU. Today, we are diving into the mental health challenges that many parents experience during and after their NICU journey. From feelings of guilt and anxiety to the trauma during your delivery or from the unexpected NICU admission, I understand the weight you’re carrying. Whether you’re currently in the thick of it or reflecting on the challenges you’ve faced, we are here to provide comfort, support, and practical advice.
May is Mental Health Awareness Month. A time to bring more awareness to mental health and its vital impact on our overall health. But what I want you to remember now and at the end of this episode is that you are not alone. The trauma you experienced either during the delivery process, while your baby was in the NICU, in the months or years that followed, or all of the above, is valid trauma. Even if the closest people around you do not fully understand it, it does not minimize what you have been through. So consider sharing this episode with those closest to you, so perhaps they will develop a better understanding of your experience and the lasting impact.
In this episode, I will share why parental mental health is so impacted during and after the NICU experience.
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- Multiple Birth Awareness Month: A Mother’s Journey Through Infertility, Twin Pregnancy, the NICU, and Beyond
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Our NICU Roadmap
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Mental Health of NICU Parents
In our most recent podcast episode, we focused on mental health, a crucial aspect of the NICU journey. Parents who have a child admitted to the NICU endure a variety of emotions. To make matters worse, each parent may handle their emotions and feelings very differently, which enhances the level of difficulty throughout the experience. Many mothers report feeling a loss of control and guilt, wondering if they did something wrong during pregnancy. These feelings are incredibly common. Many parents also report feeling a profound loss of control.
The NICU environment, with its constant alarms, medical jargon, or just even the sight of your baby either being incredibly small or surrounded by medical equipment, can be very stressful. Additionally, the NICU environment is a foreign place for most parents, enhancing the feelings of overwhelm and helplessness. Research published in the Journal of Perinatal and Neonatal Nursing emphasizes that this environment contributes significantly to these feelings (Smith et al., 2020).
NICU parents also suffer from parental role alteration, which is when they do not feel like parents to their baby. The idealistic moments parents dreamt about with their newborn changed the second they were told that their baby had to go into the NICU. The NICU environment contributes to these feelings as does the ease of the care team handling their baby while parents are often afraid to even touch them. Additionally, some care team members do not involve the parents early on with their baby as they should even while in the NICU offering parents to do kangaroo care, help with containment, diaper changes, feedings etc which exacerbate the alteration in their parental role.
Let’s take a further step back and look at why these mental health challenges occur and how common they are. The emotional toll of having a baby in the NICU is significant for both mothers and fathers, even if they handle the stress differently. The sudden shift from expecting a healthy baby to facing medical uncertainties can lead to intense emotional distress.
A 2021 study published in PLOS ONE found that nearly 60% of parents with babies in the NICU experience acute stress disorder symptoms, and about 30% go on to develop PTSD (Feeley et al., 2021). The same study highlights that the stressors are multifaceted, including the baby’s medical condition, the NICU environment, and the parents’ sense of helplessness and loss of their expected parenting role.
A study from the Journal of Maternal-Fetal & Neonatal Medicine found that parents of NICU babies are at a higher risk for developing postpartum depression and PTSD (Lefkowitz et al., 2020). Based on the article and the study, the risk of NICU parents developing post-traumatic stress disorder ranges from 30-53%. And, I want to add, that your parental distress is not directly proportionate to how many days your baby spent in the NICU or how sick they are and/or were. Parents that have an infant in the NICU for 2-3 days may experience the same distress as someone who has a baby in the NICU for months. Additionally, even if your former NICU baby is home now, progressing well, and has minimal to no complications, it does not negate your NICU experience. You, as a parent still went through a deeply distressing experience in the NICU. Do not forget that!
It’s important to note that these reactions are normal responses to an abnormal situation. The NICU experience can be traumatic, and the mental health challenges that arise are a natural consequence of this intense stress.
I like to remind NICU parents that the definition of “trauma” is: a deeply distressing or disturbing experience. It is that simple! So yes, seeing your baby struggle to breathe or get an IV placed, or be hooked up to machines and have tubes sticking out of them is traumatic. Many people try to minimize their trauma. I remember when I saw a therapist and she asked if I thought that I had experienced little trauma or big trauma after our son William was in the NICU for 3 months followed by the loss of our two other children. I responded “little trauma” in an uncertain voice. She quickly reminded me that I had gone through big trauma but here I was trying to minimize what we had been through.
One of our previous guests, Anese Barnett, who is a perinatal mental health therapist, a clinical psychology doctoral student and NICU Mom stated “NICU trauma is also considered complex trauma. Complex trauma comes from experiences that occur when we are very young or due to trauma that occurs repeatedly and constantly. So if day after day a mother hears the NICU alarms, observes her baby wince in pain, and helplessly watches her baby undergo endless painful treatments, it constitutes complex trauma.”
Acknowledging the trauma and allowing yourself to grieve the loss of the “normal” birthing and parenting experience is a very important step in the healing process. Remember, it’s okay to ask for help and to prioritize your mental health. Just as I said in the beginning, the state of your mental health plays a vital role in our overall health and well-being. And, your well-being is vital not just for you, but also for your baby and their overall health, well-being, and long-term outcomes.
Fathers, in particular, may struggle with feelings of helplessness and frustration while their baby is in the NICU. Many fathers feel an intense pressure to remain strong and provide for the family, which can lead to internalized stress and anxiety. Once home, these feelings can persist as they adjust to the new reality and responsibilities of caring for a medically fragile child. It’s essential for fathers to seek support and communicate their feelings to avoid long-term mental health impacts as well.
As I mentioned before, even after you bring your baby home, many parents will continue to struggle with the trauma and PTSD. The transition from the highly controlled NICU environment to home can be jarring. Parents often report being hyper-vigilant, constantly monitoring their baby for signs of distress, and feeling overwhelmed by memories of their NICU experience. Also, I know I felt lost once we brought our son home. I was so excited to get him there, but then I realized that I lost my NICU community and all of William’s cheerleaders! All of the NICU nurses, NNPs, and Neonatologists that knew him so well were gone – at least in the physical sense. So it is a very big adjustment to come home. Plus many parents have children with complex medical care which can be very overwhelming and stressful.
A 2020 study in the Journal of Pediatric Psychology found that nearly one-third of parents continued to experience PTSD symptoms months after their baby was discharged from the NICU (Muller-Nix et al., 2020). These symptoms can include flashbacks, severe anxiety, fogginess and emotional numbness. It’s crucial for parents to recognize these signs and seek help if they persist. Please consider being proactive and seeing a therapist or psychologist once your baby is home. I know you are busy and do not want to leave your baby, but your mental health should be a top priority. I personally waited much too long and regret the time that I feel like I lost because I was definitely not my best self. I have significant fogginess from William’s early years that I cannot get back, so please take care of you! Support from mental health professionals, peer support groups, and ongoing therapy can be essential in managing PTSD and facilitating a smoother transition to life at home.
I also want to remind you, that there will be moments that your PTSD completely sneaks up on you! It could be a song, a smell, going back to the hospital, or even driving by it. Just last week, I was looking at the paper calendar where I documented William’s daily updates for a work project. Just reading and reviewing his days in the NICU brought back so many emotions. I actually had to pause and go work on something else. And William has been out of the NICU for 10 years – so make sure you show yourself some grace if you have a moment that completely takes you off guard and brings you right back to those scary, unpredictable, nerve wracking days!
The importance of seeking support
Okay, now that we have acknowledged and validated your distressing and traumatic experience, I hope you have too. The next step is in your hands. One of the most crucial steps in managing your mental health is to seek support which can come in a variety of forms:
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1. Professional Help: Please do not hesitate to talk to a mental health professional who can suggest coping strategies and, if necessary, medication to help manage your symptoms. A 2021 study in the Journal of Clinical Psychology emphasizes the importance of early intervention and support from mental health professionals to mitigate the long-term effects of postpartum depression and anxiety (Smith et al., 2021).
As I mentioned just a moment ago, I so wish that I had sought professional help much earlier than what I did. I personally think that ALL NICU parents, but especially mothers should automatically receive follow-up with a psychologist or therapist once their baby leaves the NICU. I think it is always better to get a jump start on working through your feelings and experience rather than waiting.
2. Support Groups: Connecting with other NICU parents can be incredibly reassuring. Knowing that others have gone through similar experiences can provide comfort and reduce feelings of isolation. Research published in BMC Pregnancy and Childbirth in 2019 found that peer support groups significantly reduced stress and improved mental health outcomes for NICU parents (Johnson et al., 2019). I caution you, though, to be careful with the support groups you attend or follow on social media. Try to find an established support group that is managed by someone rather than an online forum.
3. Family and Friends: Lean on your support network. Allow them to help with practical tasks, so you can focus on your own well-being and spending time with your baby.
Self-Care Strategies
Next, let’s talk about self-care strategies that can make a big difference in your mental health during this challenging time. Self-care is essential when it comes to taking care of your own mental well-being and that of your family.
1. Mindfulness and Relaxation Techniques: Practices like deep breathing, meditation, prayer or yoga can help reduce anxiety and promote relaxation. A study published in the Journal of Clinical Psychology in 2019 showed that mindfulness-based interventions significantly reduced stress and anxiety among NICU parents (Adams et al., 2019).
2. Healthy Eating and Adequate Sleep: Try to maintain a balanced diet, especially if you are either nursing or pumping. And although I know it may be difficult to sleep, it is so important to get as much rest as possible. Sleep can be elusive, but even short naps can help. Research in Sleep Health in 2018 indicates that sleep quality is directly linked to emotional regulation and overall mental health (Lee et al., 2018).
3. Exercise: Gentle exercise, even a short walk, can boost your mood and improve your physical health. The Journal of Affective Disorders notes that physical activity can alleviate symptoms of depression and anxiety (Reiner et al., 2019).
4. Journaling: Writing down your thoughts and feelings can be a therapeutic way to process your emotions. A study in Health Psychology Review in 2018 found that expressive writing can improve psychological well-being and reduce stress (Sloan et al., 2018).
Here are some tips that may help with your mindfulness practice:
- Set aside regular time to practice. Short periods of practice more often can be more effective than longer, less frequent sessions.
- Find a comfortable, safe space where you won’t be distracted. Being outdoors or surrounded by nature can also help.
- Don’t worry about doing the exercises correctly.
- Try to build up your practice gradually
Fostering a Positive Mindset
It is also important to work on fostering a positive mindset. This does not mean ignoring the difficulties you are currently going through, but to try and find moments of gratitude and hope amidst the challenges.
1. Celebrate Small Wins: I tell this to NICU parents all of the time and it is so important in my opinion. Every tiny bit of progress your baby makes is a victory. Celebrate these moments and milestones, no matter how small. According to a study in Pediatric Research in 2021, acknowledging and celebrating small milestones can improve parental mental health and foster a positive outlook (Garcia et al., 2021).
2. Stay Informed and be an active member of your baby’s care team. I will try to keep this brief and not go into a lecture, but understanding your baby’s condition and the care they are receiving is essential. Please do not be afraid to ask questions. How will you ever learn if you do not ask questions? The more questions you ask, the more you will learn and understand. Also, the more you learn, the more confident you will become which will reduce your anxiety. Also practice and participate in your infant’s daily cares. I know this will look different for everyone, but whether it is changing your baby’s diaper, helping with containment during an assessment, or feeding your baby, it is essential that you become and remain involved in their care. It will also help with your confidence and actually help make you feel like a parent.
There are oodles of research on the importance of parental involvement in the NICU. Like I said, it will help to reduce your anxiety, build your confidence, increase attachment, and once you are more engaged, you will confidently be ready to take your baby home when they are ready. Parental involvement results in improved long-term developmental outcomes for your baby and improved outcomes for the family as a whole.
This is why I essentially started the podcast and created our NICU Journal, Our NICU Roadmap – to educate NICU parents, guide you with questions to ask, encourage your daily involvement, and empower you to be a part of your baby’s care team – I promise it will make a significant difference for you and your baby.
3. Gratitude Journal: We mentioned journaling previously, but a proven method to keep your mind focused and upbeat, is utilizing a gratitude journal. Yes, there will be days that you find it difficult to write down one thing you are grateful for, but you will find something. It helps you to identify who has done something kind for you, a tiny success your baby had, or even the fact that you had a decent bit of sleep. It helps you to develop a sense of gratitude and improves your overall well-being.
Closing
As we wrap up our discussion on mental health in NICU parents, let’s reflect on some of the key points we have discussed. We have reviewed some of the profound emotional challenges that come with having a baby in the NICU, from the initial shock and guilt to the ongoing stress and anxiety. We’ve explored the importance of seeking support, whether from mental health professionals, peer groups, or loved ones, and highlighted self-care strategies that can make a significant difference in your well-being.
We’ve also shed light on the prevalence of PTSD among NICU parents, emphasizing that these reactions are normal responses to an extraordinarily stressful situation. Whether you’re still in the NICU or transitioning home, it’s vital to recognize and address these feelings.
Most importantly, please know and recognize that you are not alone. There are resources available and professionals who are more than willing to help you through this experience and beyond. Your mental health is just as important as your baby’s physical health, and taking care of yourself is a vital part of this journey.
Remember, you are doing an incredible job amongst an incredibly challenging situation, and we are here to support you every step of the way. Stay strong and take care of yourself throughout this journey.
References
– Graham, E. et al. (2019). *Journal of Perinatal and Neonatal Nursing*.
– Lefkowitz, D. et al. (2020). *Journal of Maternal-Fetal & Neonatal Medicine*.
– Smith, R. et al. (2021). *Journal of Clinical Psychology*.
– Johnson, S. et al. (2019). *BMC Pregnancy and Childbirth*.
– Adams, C. et al. (2019). *Journal of Clinical Psychology*.
– Lee, S. et al. (2018). *Sleep Health*.
– Reiner, M. et al. (2019). *Journal of Affective Disorders*.
– Sloan, D. et al. (2018). *Health Psychology Review*.
– Garcia, P. et al. (2021). *Pediatric Research*.
– Taylor, R. et al. (2019). *Journal of Neonatal Nursing*.
– Murphy, K. et al. (2020). *Frontiers in Psychology*.
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