How My Son’s NICU Experience Traumatized Me

nicu-stay-traumatized
Image via Rachel Engel

It's not like I was a huge fan of doctors to begin with, to be honest. I remember having childhood panic attacks at the possibility of needing a throat swab from my pediatrician to rule out strep throat. And if I needed shots? Forget it. I was sobbing quietly into my mother's shoulder. I have always had a white-lab-coat phobia, and after my son's NICU stay and detailed medical issues, it's only gotten worse.

Day after day, my husband and I would wake up on that plastic couch in our son's hospital room, and every day for almost three months, it seemed doctors would come in and tell us bad news — really bad news, too. Not small stuff that seems big at the time. No, the blows they were delivering were harsh and scary and sometimes not at all accurate. We would be told to prepare for the very real possibility of a chromosome disorder, and so we spent weeks with our stomachs in knots and our anxiety through the roof, waiting on those results to come in, only to have them forget to tell us when they did. Or that he was breathing three times faster than a normal newborn should, and no one knew why, nor did they seem very interested in finding out why. 

{ MORE: So, Your Baby Still Isn't Walking? Guess Nobody Told Him to Worry about Milestones. }

For an entire summer, I cringed each time a doctor set foot into my son's room, not expecting answers, only more uncertainty, more negativity, and very little compassion or sympathy. It was shocking to be among professionals who chose to work with children, yet so few offered an ounce of kindness or semblance of humanity.

My husband and I had to band together and fight for surgeries that eventually made it safe for our son to come home. Having to demand a surgery that, two weeks post-operation, ended a 90-day NICU stay? Unbelievable.

It's been over a year since we brought Jack home, and his progress is more amazing than I dared let myself hope for way back then.

My willingness to lean on doctor-given advice and seek out medical professionals, however, is completely gone. The emotional toll those months took on our entire family has not healed in regards to the white lab coat. It seems silly and overdramatic to use a word like “scarred,” but that's how I feel.

It's the reason I stay hyper-vigilant during cold and flu season and prefer to let him work the sickness out on his own, rather than running to the doctor. I put off well-baby check-ups and vaccines until the last minute, and during those visits, I am firm in my assessment of his development and well-being, unwilling to let another doctor wrongly assert their diagnosis-sans-hard-facts again.

Unless absolutely necessary, I avoid medical environments altogether, and the knowledge of any upcoming appointments nearly sends me into a full-blown panic attack. The anxiety gnaws at my stomach for days leading up to those meetings, and I spend the entire appointment close to tears. 

{ MORE: My Misguided Quest For Normalcy }

It doesn't seem like something I can get rid of, and searching for a different doctor to ease my fears and work through this anxiety isn't possible with our current medical coverage.

When we left the children's hospital with our son finally in tow after a long, scary summer, I thought we would finally be able to move past the emotional setbacks we had been served.

Clearly, I haven't.

What do you think?

How My Son’s NICU Experience Traumatized Me

Rachel is a stay-at-home-mom to her 4-year-old daughter, Sydney, and her 18-month-old son, Jackson. Her writing can be found all over the web, mostly detailing her own parenting struggles and triumphs, as well as her life as the military spouse of an active-duty airman. She also writes about her life as as a special needs parent on her blog, Tales From the Plastic Crib, and spends an unnecessary amount of time on Twitter. ... More

Tell us what you think!

5 comments

  1. Profile photo of Alysha Alysha says:

    I’m so sorry you had such an awful experience. When my son was in the NICU the nurses were nice, but extremely firm. They were treating me harshly because a) I was only 18, and b) they were told I most likely caused my own preterm labor, which was 100% untrue but still hurt regardless. The doctors that scarred me were the ones treating ME and not my son. So many horrible things happened. I was accused of “sticking something up there” to start my own labor prematurely, I was given an excessive dose of Nubain when I didn’t need it which caused me to overdose and aspirate vomit, causing aspirational pneumonia (they blamed this on my “untreated acid reflux”), and the constant barrage of doctors taking one look at me and either laughing or making derogatory comments because of my age. -I- will never be treated in that hospital again if I can help it, but my son is welcome there – their pediatric team seemed fantastic.

  2. Profile photo of Carol Carol says:

    You are an amazing woman Rachel. I worked in the medical field for over 22 years and the most frequent advice I give my friends and family is; you are in charge of your own medical care. Now, that being said you still must have doctors and nurses to take care of you. But staying involved and advocating for your childs care, ie surgery, made the difference in his recovery. Surgery has risks and physicians do not enter into a surgical procedure until they have tried nonsurgical options. I hate that you are afraid of doctors now. There are some wonderful ones out there. Find yourself a really good internist or General Practicioner. You may have to go to several before you find the right one but dont lose hope. Your friends and family can make suggestions. Avoid choosing based on advertising!!! The best physician will be one that spends time listening to your medical problems and then plans followup lab/visits accordingly. I have a fabulous physician in Fairhope, Al and whenever I need to go see a specialist I always tell him, “Dont send me to the closest, send me to the best”. This means traveling an hour sometimes but I know when I see them I will not wind up wondering if I got the right diagnosis. The key here is that my internist is fabulous. Your experiences with your son were tramatic and after being in the NICU with my grandson for 2 weeks I have a very small idea of what you went through. My daughter still gets emotional when she thinks about it. I tell her that she can be an inspiration to other mothers going through the same experience. You are an inspiration. Pat yourself on the back for that. Thank you so much for sharing!!

  3. Profile photo of Kimberly Kimberly says:

    That sounds absolutely horrible. My son was in the NICU and I had the exact opposite experience. He was born at 33 weeks and needed a feeding tube but was otherwise pretty healthy. Being in the NICU is scary regardless and his Drs and nurses were so friendly and caring and did what ever they could to make us and the other families that were there very comfortable. Unfortunately it sounds like you had a bad team and in that situation I don’t blame you for being jaded. It was the kindness of everyone involved that helped the healing process for my family.

    • Profile photo of dvmsara dvmsara says:

      Ditto to Kimberly–sounds like you had some bad luck with your medical team. Most people I know who have had children in the NICU have gushed about how fabulous and caring the doctors and nurses were.

×

Send this to a friend