Introduction
For our 28th podcast episode, I decided to share pieces of a speech that I presented at a NICU conference. I spoke on parental stressors common to many NICU parents and why parental education, involvement, and empowerment are so crucial for the entire family. Any parent who has a baby in the NICU will experience stress and trauma regardless of your baby’s diagnosis or the the length of time they spend in the NICU. And sadly, it is very common for parents to not feel like parents once your baby is admitted to the NICU, which can negatively impact a parent’s ability to bond with and nurture your baby.
It is very common for parents to experience parental role alteration and perhaps feel as though they do not know how to care for their baby due to their NICU admission. It is commonly due to either fear or uncertainty of what to do, or from fear of harming your fragile infant. If parental role alteration is not addressed and your involvement is not encouraged, it can create a negative compounding cascade of events.
Listen now or keep reading to hear many of the feelings common to NICU parents and how they can impact your mental health and ultimately affect your baby and their outcomes if not addressed then listen to my recommendations as someone who has walked the path as a NICU parent before you! I promise you, you are not alone in what you are feeling and experiencing.
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Episode 28
A traumatic delivery versus the experience you had previously dreamt about
For any of you listening, what were some of your first thoughts once you either found out that you were pregnant or your significant other was? Did you envision those very first moments after your baby was born? Dream of hearing that first cry, having them placed on your chest right after the delivery as you look down upon and become completely enamored by this beautiful gift you created. Most of us dreamt of those moments for years, but especially in those last months leading up to their delivery.
But for many parents, including myself, not only was the experience completely different than we had imagined, but it was actually quite traumatic.
To have all of those idealistic moments replaced by a completely traumatizing experience is not only unforgettable, but something that will take years to work through and even then, it will never really leave you.
Even if a NICU admission was anticipated for your baby, there is still no adequate preparation to helplessly watch the NICU care team, care for, possibly resuscitate, and eventually take your baby from you to the NICU. The initial crucial moments of parent-child bonding, skin-to-skin care, and nursing have been stripped from you and all of your instinctual parental obligations were taken from you just as your baby was when it whisked away to the NICU.
Do not underplay it and do not minimize it.
Common feelings of NICU Parents
All NICU parents endure a variety of stresses, struggles, and emotions from that initial moment, throughout your baby’s NICU stay, and sadly, in the years to follow. Many parents do not openly discuss their thoughts and struggles for a variety of reasons. Either due to fear of appearing weak, fear of the focus being taken away from your baby, denial, or just due to the sheer act of selflessness common to many parents. But also just shame. I know some of the thoughts and feelings that crept up into my head, I was either embarrassed about, confused where they came from, or afraid to admit many of the fears I had, the jealousy, and the anger.
Here is just a glimpse into some common thoughts or concerns I personally felt or have heard from other NICU parents.
“I cannot believe this happened to me” “I am afraid he is going to die” “I do not know how I’ll survive if he doesn’t make it” “How can we trust everyone who is caring for him” “How do we know if the treatment plan is correct for him” “Will our marriage survive this” “How are we going to get through this?” “How are we going to pay for all of this?” I am afraid of getting too attached in case he doesn’t survive” “I wish my husband was here with me more” “I wish my husband would talk more openly with me about what he is feeling instead of acting so brave” “No one here knows how I feel” “I feel so alone” “I am so angry” “I am jealous and do not like that very pregnant women I saw on the elevator this morning who was complaining about still being pregnant” “I am afraid to touch my baby because he is so small” “What on earth are all of these wires and tubes hooked up to him right now?” “What if I dislodge something and harm my baby?” “How could I have let this happen” “How did I not see the signs” “My body failed me and I have failed my child and my husband” “What should I have done differently?” “What do these nurses think of me?” “I don’t feel like talking to anyone right now” “I am tired of explaining to everyone how he is doing and am fearful I will jinx his progress if I say he is doing well” “I am afraid to leave my baby and cry every night when I go home”
Regardless of the number of times that I practiced my speech, I always became emotional when I read this part, every single time. Maybe because it brings it all back to me after attempting to shove some of those feelings down for 8 years, maybe because I still carry so much guilt with me, or maybe because for any of you that are currently going through this, I see you and I feel you.
The NICU experience is not one that I wish upon anyone. It is a journey that only those of us who have walked through personally will ever truly understand. It is scary, stressful, and both physically and mentally exhausting. It is also an experience that will be with you for the rest of your life. It is not something you can shake or completely forget once you walk out of those doors. There are so many raw feelings and emotions associated with it.
The physical and mental toll during my son William’s NICU journey were unprecedented. Until I personally experienced all of the worry, fear, anxiety, powerlessness, and trauma, I was unable to fully comprehend the struggle NICU parents carry with them each day. During our NICU journey, I felt completely defenseless and my heart physically hurt as I witnessed my beautiful, tiny baby fight for his life each day.
Stresses common for NICU Parents
There are multiple stresses parents endure each day during their baby’s NICU journey.
Physical appearance of NICU baby and life-saving equipment
As a parent, to see multiple wires and tubes hooked up to your baby plus life-saving equipment surrounding them is very overwhelming. As your ears fill with the sounds of unfamiliar, frightening alarms, and your senses are kicked into overdrive, there is so much going on and ALL you want is to see your baby’s face and to know that they will be okay.
It is also very normal to become distressed by the appearance of your baby either due to their size or all of the life-saving equipment attached to them. Most parents, even if you have a medical background, have minimal knowledge of the typical NICU routines. Although I was very familiar with them, to helplessly watch MY CHILD wince in pain during his care time due to his horrific skin breakdown, was nearly unbearable. Or to stand there and watch him have a significant apnea episode followed by a long desaturation was beyond scary – even for me!
Alteration in Parental Role
And most parents just flat out do not feel like parents! As I said in the introduction, the alteration in parental role is very common for NICU parents. You feel as though your role as a parent has been stripped from you – especially as you watch the NICU care team care for your baby so effortlessly. It can make you feel incompetent as a parent and hesitant to jump in and help out due to fear of negatively affecting your baby or causing them harm. It is not uncommon for parents to feel so utterly helpless that they just stand there stunned and unsure what to do.
Unnatural physical separation from your baby
It is also incredibly difficult to cope with the physical separation from your baby. From that first moment your baby was taken away, it created a potential negative cascade of compounding effects for you as parents and the family unit as a whole. Until I personally experienced how traumatic it was to see my beautiful, tiny baby taken from me for his transport to a different hospital, I could not comprehend the toll it places on all NICU parents. And it is not just the initial separation, but the heartbreak and toll it places on your heart to leave them EVERY. SINGLE. DAY. is indescribable. It is unnatural to be separated from your children, especially your brand new baby!
The separation does not become easier as the times progresses either. And sadly, even once you bring your baby home, the trauma associated with the separation during your baby’s time in the NICU does not just get better.
Additional personal stressors for parents outside of the NICU
The distress NICU parents endure due to concern for their child, having witnessed near-death or resuscitation events, the appearance of their child, all of the feelings of overwhelm and powerlessness, and from the forced, unnatural parent-infant separation result in compounding effects for the entire family. But there are also several other sources of stress for parents outside of the NICU with the responsibilities of organizing child care, going back to work, transportation issues, the family finances, and marriage and relationship stresses just to name a few.
NICU-related stress, anxiety, trauma and PTSD
As a consequence of all of these stresses, it is common for NICU parents to suffer from aspects of stress and trauma-related distress such as anxiety, stress, or post-traumatic stress. Even brief NICU stays, regardless of the infant’s diagnosis, are considered traumatic by parents. Mothers especially are at an increased risk for depressive symptoms, one data analysis reported that 18.5% of mothers with high-risk newborns meet diagnostic criteria for post-traumatic stress disorder or PTSD after birth compared with 4% of mothers in general. With NICU mothers having higher rates of postpartum depression, although you may not recognize it, it can negatively impact your ability to nurture your baby.
Deviation from the norms of pregnancy, childbirth, and parent-child attachment
Any parent whose child has been admitted to the NICU experiences a deviation from the norms expected for pregnancy, childbirth, and parent-child attachment. As we just reviewed, the experience can be very traumatic, cause psychosocial distress, affect parent-child bonding, and negatively affect both short-term and long-term developmental outcomes for your baby. As a parent, if you feel incompetent, unprepared, uneducated, and unable to care for your own baby, it does have the potential to impact your parent-child attachment and can negatively affect your ability to learn your baby’s developmental cues.
Negative effects of trauma and PTSD on bonding and attachment
Unfortunately, for all NICU parents, including myself, not only do the distressing memories linger, but may have long lasting negative effects on the parent’s mental health and your ability to nurture your baby if it is not addressed. Studies have shown that distressed NICU parents will interact with their baby differently than a parent who did not experience stress or trauma.
For me personally, although it took me a while to recognize it, I know that I experienced trauma and PTSD from my pregnancy, William’s sudden delivery, and his time in the NICU. Although I do not believe it affected my ability to bond with him because of my experience and knowledge as a former NICU nurse and NNP, I do know that I continue to suffer from some depression and PTSD. I’ve since realized that some of William’s first years are a bit of a blur to me, likely due to my fog and PTSD as memory and concentration problems are common symptoms of PTSD.
I do not say all of this to make you feel down or hopeless, but mostly to ensure that you know you are not alone in your feelings of stress, powerlessness, and perhaps depression. I and so many others are right there with you. But please heed my advice and learn from my mistakes.
Tips to minimize the potential negative effects from NICU stress and trauma
1. If you notice that you are not actively engaged or lack the desire to become involved in your baby’s care while they are in the NICU or at home, please find a professional to speak to or at the very least please bring it up to your significant other or a friend or family member. Let them know that you are having a difficult time. It is not a sign of weakness, but actually strength when you can admit that you might need some additional support. Active parental engagement with education, skin-to-skin care, and by becoming an active member of your baby’s care team will not only help to alleviate a lot of your anxiety and depression, but it also promotes parent-infant bonding.
2. If I haven’t said it enough already, become actively involved in your baby’s cares, do daily skin-to-skin care when possible, assist with positive touch, or two-person care, and love on your baby. Your baby will significantly benefit from it and so will you! Your ability to bond with and engage with your baby is vital, and not just for your baby’s success, but also the family unit as a whole. By simply bonding with your baby, even while they are in the NICU, will minimize the risk of future mental health disorders for you as a parent. Once you become actively involved in your baby’s care, it will confidently equip you to care for your infant in the NICU and at home! As you begin to nurture your baby and bond with them, you will gradually learn to respond to your baby’s needs, which will ultimately positively affect your baby’s long-term physical, cognitive, social, behavioral, and emotional development. It is a virtuous cycle where one positive experience leads to another which further promotes the first occurrence. It is a beautiful positive feedback loop!
3. Get professional help regardless of whether or not you think you are handling everything well. As I said, I did not realize that I was struggling with PTSD until years later. I should have spoken with someone much earlier than I did and perhaps I would have been more mentally well and would have more vivid memories of my miracle thriving at home. Any amount of time that your baby spends in the NICU is traumatic. Do not underplay it, do not minimize it, and do not ignore the subtle signs. You and your baby deserve the best, healthy version of yourself!
Closing
After listening or reading the show notes, I hope you realize that if you are a NICU parent, that you are not alone. Although every NICU journey is different, the stress and trauma many NICU parents experience is similar. I hope you can take some solace in knowing that I and so many other parents know what you are going through and we see you and are here for you.
The episode was not meant to bring you down even more, but to remind you that by caring for yourself both physically and mentally and becoming engaged with your baby will result in positive outcomes for your family unit as a whole. It is a virtuous cycle, once you become engaged with your baby in the NICU, you will begin to bond with them and learn their behavioral cues, it will build your confidence, positively affect your mental health, which promotes even further parent-child attachment, and ultimately positively affect the trajectory of your baby’s long-term developmental outcomes.
Additionally, please remember my advice to not just seek professional help when you feel really down, but be proactive about it so you are the best version for yourself, your baby, and your family!
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