Hand to Hold's Official Blog: Written by Parents for Parents

The Misdiagnosis of PTSD in Preemie Parents

Photo credit: Benjamin Earwicker

Photo credit: Benjamin Earwicker

Nightmares. Jitteriness. Feeling jumpy. Heart palpitations. Avoiding places that remind you of “that awful time.”

What does that sound like? Without any context, to most, that list sounds like symptoms of post-traumatic stress disorder (PTSD). PTSD is something many women who had traumatic pregnancies, deliveries or babies in the NICU are frequently diagnosed with.

Despite having the diagnosis, however, not every man or woman with these symptoms actually has PTSD when they’re diagnosed.

The idea behind PTSD is that it’s post-trauma, meaning the trauma is over. Unfortunately, as many preemie parents know all too well, the trauma doesn’t end after the pregnancy is over or the baby comes home. From lingering postpartum medical complications for mom to bringing home a baby with complex medical needs, the trauma is ongoing for everyone involved.

This means that the hypervigilance, the feeling like your heart stops when you hear your microwave beep, isn’t a sign of PTSD. It’s a sign that your nervous system is still on high alert, because you don’t feel safe yet. The trauma isn’t over yet, which means that not only is the PTSD diagnosis inaccurate, but also that treating your anxiety as PTSD won’t be effective.

This misdiagnosis could lead to you feeling stuck, hopeless and prematurely ending treatment, leaving you believing that nothing will help and you’ll feel this way forever. In fact, the reality is that the continued trauma is like a red light for healing. It’s your signal that healing cannot happen right now. Your mind and body’s priority is to find safety first, heal later.

This is not a reflection on your ability to heal, however.

Once the trauma ends, you will be able to heal with the proper professional support. You will not feel this way forever. PTSD is a very real condition that many women who have experienced a traumatic pregnancy or delivery and many parents of NICU babies go through. Recovery from it is possible but is dependent on access to appropriate treatment at the right time.

Until then, you can take action to manage those nightmares and calm the jumpiness. Focus your energies on how to cope with what you are going through right now.

Here are a few ideas to get you started:

  • Focus on your breath. Close your eyes and bring your attention to how it feels to inhale and exhale with each breath.
  • Exercise regularly. Whether it’s pushing the baby in the stroller around the block, walking up and down the stairs while you’re on hold with the insurance company or taking time to go to the gym, moving your body triggers a calming response from your nervous system.
  • Eat healthy meals. I know when you get bad news or you’re anxiously awaiting test results for your baby, eating a pint of chocolate ice cream feels comforting. However, a diet high in sugar and processed foods enhances mood swings. Keep nuts, seeds and fruits at close hand so even if you don’t have time for a full meal you’re nourishing your body and your mind.
  • Get professional help. If you are having difficulty managing the ongoing trauma on your own, reach out to a professional for support to help you cope until the trauma ends.

All of these will help you move from a place of helplessness and powerlessness to one of control and power, which are imperative for healing.

Parijat Deshpande About Parijat Deshpande

Parijat Deshpande (CA) is a micropreemie mom and the leading perinatal wellness expert who specializes in working with women during a high-risk pregnancy. She educates and guides women on how to manage their stress and anxiety so they can have healthier pregnancies, decrease their risk of preterm birth and give their baby a healthy start to life. Parijat is a clinically trained therapist, a women’s wellness expert and an experienced speaker on the impact of stress on health and wellness.

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