PTSD and Mothers of NICU Babies

NICU – Neonatal Intensive Care Unit – I have a love/hate relationship with it. I am thankful for the technology and the knowledge and the nurses and the doctors who have one of the hardest and most stressful jobs. The NICU doctors and nurse have to be detectives because their patients can’t tell them where it hurts, their pain level or discomfort; the mothers and staff are on constant alert. Eventually, you will learn the difference between a cry of pain and a cry of discomfort, but even after that, you have figure out where the pain is located or what is causing their discomfort. Then there are the babies who are more docile and passive and don’t cry, and out of nowhere their heart rate drops and the alarms go off. It amazes me when something changes with my granddaughter, and they need a sonogram or an x-ray they can do it all at the bedside. When my daughter voices her concerns about any changes with my granddaughter, the nurses listen and take it seriously, and they make notes, they share the information with the doctor and monitor her more closely. For that, I am thankful. Egleston has the most amazing staff, and it has been a blessing, and I am in awe daily with the staff at Egleston.

For the last eight weeks, my granddaughter has been in NICU. Shortly after birth, she was diagnosed with having an Esophageal Atresia and a Vascular Ring. At times the stress has been unbearable, and I have noticed that I tend to take more on myself because I’m not only the grandmother but I am the mother of the of a mother whose child is in NICU, so I have to be strong for both of them. I have to make sure I can take care of my daughter and be there for my granddaughter when my daughter needs a break. Most days, I appear to be strong and confident. I question everything the doctors and the nurses do and tell us (mostly so I can understand, mostly so I can make sure nothing is missed), I keep up with all of the housekeeping items, and I watch. I watch my daughter, and I step in if she is overwhelmed. I watch my granddaughter’s vitals, and I notify the nurses if I think she is struggling to breathe or seems to be in pain. But on the inside, I am screaming and falling apart. When we leave the NICU, I spent the next few hours hearing the alarms and chimes. I wake up hearing the alarms; I now can tell the difference between each alarm and what they mean. I can’t stand to go out to a crowded restaurant because the noise is overwhelming. I will hear a microwave go off and my body tightens, and I immediately go into defense mode. I started wondering can a parent show signs of Post-Traumatic Stress Disorder (PTSD) from an extended amount of time in NICU? The APA DSM-V list the following symptoms for PTSD: first you have to have witnessed or been a part of a traumatic event (I would say watching your child struggle to breathe and in pain and hooked up to seven different machines would be a traumatic event so ✓) along with a combination of re-experiencing the event;  nightmares, intrusive thoughts of the traumatic event, flashbacks, marked emotional distress when exposed to traumatic reminders, strong physiologic reaction when exposed to traumatic reminders. The outcome could also trigger irritable behavior and angry outbursts, reckless or self-destructive behavior, hypervigilance, exaggerated startle response, concentration problems, sleep disturbance.

I have seen several of these behaviors in the mothers of a NICU baby. They are watching their child struggle and that is a traumatic event. We all spend the day on a roller coaster of emotions first your baby getting better and then getting worse. I, myself, have had to deal with my granddaughter having bradycardia in my arms. One minute she was awake and alert, and the next minute she was blue and non-responsive; after a few minutes they resuscitate her and she was back. It was one of the scariest moments of my life.  There are those who think the NICU is a quiet, peaceful place where you just sit and watch your baby sleep, but it’s not. Those nurses are on high alert, and they are in constant motion. There is always an alarm going off, or a baby needing to be changed, or vitals that need to be check, and medication to be given. We hear other parents crying from concern. We’ve watched families fall apart after losing their child, and we have watched others go home with their child wishing it was us. That roller-coaster of emotions wears on your nerves, it is painful, it is exhausting, and it never stops. I’ve dealt with the bad dreams and the flashbacks. I’ve watched other mothers lash out at nurses knowing it was not personal and understanding that it is a reaction to their own fears and uncertainty, and I’ve dealt with concentration and sleep problems. I find it hard to get back into the real world when after being cocooned in the NICU unit; and I’m a grandparent!

We are on constant watch for any changes with my granddaughter. I think a lot of people think we just sit up there in a quiet room and watch her sleep, but it is nothing like that. Just the transitioning of her from the crib to her mother’s chest for skin to skin time is stressful. She is attached to a feeding tube, out output monitor, heart monitors, oxygen, an Anderson tube, and IVs. All of those items are attached to various machines on two different poles. It takes three of us to move her, myself, my daughter, and a nurse to make sure it is done safely. And then I am always watching; watching her, watching my daughter, watching the monitors, checking her output for blood. Every time she cries, you have to figure out why. Is she in pain, or is she uncomfortable? She is much more alert and aware now. She is tired of the nasal cannula for the oxygen, and she has ripped out several times. She’s tired of the blood being drawn and the procedures. After her last procedure as soon as we got her back on her mother’s chest, she lifted her head up and looked her straight in the eye and started complaining not crying but cooing in a very “I am not happy about all this stuff they are doing momma, and I want to go home.” It made me smile I’m glad she is alert enough to get frustrated with them poking her it’s so much better then after her first surgery was, she retreated and didn’t wake up from anesthesia for 2 ½ days. I’d rather her be complaining.

The journal of the American Academy of Pediatrics states that Parents of premature infants are susceptible to developing trauma symptoms related to their NICU experience. There are no current well-established interventions that simultaneously address both parental trauma as well as a redefinition of the parenting experience.” And I see it I walk in and out of that NICU and we all look like zombies uncertain about the future and wondering how we got there. We are riddled with sadness, grief, and even guilt. But a lot of us don’t want to sit around and share our stories with each other. I think it’s because our stories are enough to handle and we can’t take others onto.  They also found that 44% of NICU parents show signs of Acute Stress Disorder ASD along with symptoms of PTSD.

We are one of the lucky ones. We have a large supportive family. My daughter and I are able to visit my granddaughter every day. My daughter has been able to produce breast milk, and she started skin to skin 4 days after the birth of her daughter. We have family members in the medical field who have helped us navigate and guide us through this overwhelming situation. So what do we do for the parents who do not have the support that we have? How and where do they go for support and help? Today many NICUs have caseworkers and child life specialist who help the parents find the support they need. They also set up events for the parents, such as beads of courage and bingo; these help the parents escape for a short time and connect with others. The Ronald McDonald House creates an environment where parents can stay for a small donation and not worry about the cost of a hotel. These are all great resources, but more needs to be done. Mothers need to reach out and be able to ask for help, staff members need to share resources for mothers to use, and counselors need to make the trip to the hospital for those parents.

If you are a loved one is experiencing anxiety, trauma or depression due to chronic illness of a loved one please know that I pray for each of you daily and I would recommend you ask one of the nurses if there is a case worker, social worker, counselor or Chaplin on staff.  You can also reach out to Dr. Natasha Thomas at Hope Grove Psychiatry in Alpharetta at hopegrovepsychiatry@gmail.com

Shaw, R. J; (2013). Prevention of Traumatic Stress in Mothers with Preterm Infants: A Randomized Control Trail. National Institute of Health. Journal of the American Academy of Pediatrics. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784295/

Author: Lei Rhyne, LPC, NCC, CHt.

Life can weigh you down, it can be overwhelming when you are juggling loved ones, children, work, parents, trauma, grief, loss, major life changes, etc. It can make you feel as if you are carrying the world on your shoulders and sometimes you need someone to help you unload it, explore it, and release it. My approach is one of guidance. My goal is to guide you through your struggles and pain and back to your true authentic self. I am an integrated therapist who believes in treating the mind, body, and soul using various theories and techniques. I help my clients explore their feelings, challenges, and behaviors and discover where they are stemming from. I guide my clients through acknowledging those feelings and reactions and work on changing the behaviors and bringing them to a place of acceptance. I use a variety of techniques including person-centered, solution-focused, cognitive behavior therapy, expressive art therapy, meditation, brainspotting, and psychodynamics. I have created a holistic and safe environment for you to unload your worries and fears. I believe that every person is worthy of acceptance and peace and I strive to help you meet your fullest protentional and embrace your uniqueness. View all posts by Lei Rhyne, LPC, NCC, CHt.