“What do you think she will look like?” I asked my husband while affectionately rubbing my ginormous pregnant belly.
He smiled at me, “She’s going to look just like you, Honey.” I remember that sweet comment and that perfect moment so vividly.
It was February 2018, and I was due with our first child. Daydreaming about what our precious daughter would look like was a common conversation.
I was longing to hold her in my arms. Excitedly, I had laid out five different sets of adorable little newborn outfits that were ready for her arrival. She was going to be the cutest, best dressed baby the world had ever seen!
Little did I know, the first 48 hours of my child’s life would be the start of my medical trauma journey.
Trigger Warning: The following story has some graphic details of physical and emotional pain. Please use caution. If you feel triggered while reading this, please be kind to yourself and exercise self-care before going further.
My Daughter’s Birth
After going to the hospital to be induced, I labored for about 12 hours.
Once labor was finally coming to an end, I vaguely remember the doctor murmuring something about meconium. There were NICU nurses quickly coming into the room with their carts, but I was hardly paying attention through the pain.
With my last push, my gorgeous baby girl arrived and I was expecting to have my “golden hour” of snuggling with her. However, before I knew it, the umbilical cord was snipped and she was whisked from my arms.
Quickly they cleaned her…suctioning her mouth and nostrils as I strained to see what was happening from the hospital bed.
They wrapped her up and brought her back to me, explaining that I could hug and kiss her, but they needed to monitor her due to the amount of meconium she had inhaled. “She passed her Apgar. This is just a precaution,” they said as they wheeled her out.
Honestly, I don’t remember much more of that day. I slept on and off, only waking to eat and ask how my baby was.
“She’s stable,” I was continually told. “We pumped her stomach to get out some of the meconium. She’s hooked up to a CPAP to help clear out her lungs.”
Believing that the situation was only temporary, our families celebrated the birth with us at the hospital. We took turns talking about how excited we were to finally get to hold her.
Then the Night Came
Late that evening, the quiet stillness of the hospital room permeated my thoughts. It fueled a fear that something more sinister was going on inside my daughter’s body.
As if on cue, the on-duty doctor came and woke my husband and I from a shallow sleep, gently explaining that our daughter had just been placed on a ventilator.
Her lungs, full of tar-like meconium, had stopped inflating on their own.
In addition to the ventilator, a feeding tube had also been inserted in her nostrils to reach down into her stomach. Her bellybutton had several different cords snaking out from it, all monitoring her vitals.
Fentanyl was being administered via IV to help offset the pain of all the medical equipment inside her tiny, six pound body. It was also supposed to help her sleep and keep her calm.
Quietly, my husband and I held hands and listened numbly to what we were being told.
The doctor softly asked us both if we understood what she was telling us. Silently, we nodded.
The doctor reached over and took my free hand, and paused for a moment before delicately explaining that our child’s chances of surviving were fifty-fifty.
“You need to prepare yourselves.”
After the doctor left, my husband collapsed into a chair and began weeping into his hands. But I couldn’t do anything. I couldn’t cry, or speak, or comfort my spouse.
How could this have happened? Were we being punished? Was God angry with me? Had I caused this to happen to her? Did I do something wrong during my pregnancy?
I sat down next to my husband and wrapped my arms around him. “God, please don’t take our daughter,” I prayed.
The Battle for Her Life
The following day, my daughter had to be transferred to a more equipped hospital in our city.
They placed her tiny little body inside a giant transportation device that basically just looked like an overgrown plastic box on top of a gurney.
My husband was able to go with her in the ambulance while I had to be cleared to check out from the hospital.
And let me tell you, I didn’t care one bit that it felt like my insides were falling out or that my legs were shaking from the pelvic pain and stitches.
I was DETERMINED that the doctors were going to discharge me so I could go to my daughter.
Thankfully, it only took a few hours to process the paperwork and I was able to get to the next hospital where my daughter had been checked in on the NICU floor.
We quickly discovered that there was no privacy to be had – it was a constant rotation of doctors, nurses, respiratory specialists, lactation consultants, counselors, and various other medical professionals coming in and out.
I planted myself inside of that tiny NICU room like a tree and refused to move for any reason other than to eat or use the bathroom.
There was a small bench in the room covered in thin, plastic vinyl.
And that’s where I slept for the first few nights.
We Were Wrecked
I don’t have many words to eloquently describe what it was like for me to love my baby fiercely, but also not feel emotionally connected to her yet.
She grew in my womb for 9 months, but it felt surreal that I was actually carrying a real human being. And then once she was born, she was basically unconscious for the first 2 days.
I really hadn’t held her properly. There were no sweet cuddle moments. No way for me to feed her, whether by breast or by bottle.
Those adorable newborn outfits couldn’t be worn due to all the medical cords.
I was absolutely terrified that she was going to die, but also scared that if she lived, there would be no attachment between us.
Then, during the evening of the second night, my daughter opened her eyes while I was speaking to a doctor. My sweet baby girl tossed her head around frantically until I walked over to her.
Her eyes met mine, and her tiny body stilled.
It was like she woke up for the sole purpose of finding me.
In what might be one of the most pure and magical moments of my life, my daughter stared at me while I softly talked, sang, and prayed over her for close to half an hour.
Finally, I felt like there was hope. We had an emotional connection. I had seen her soul in those big, beautiful eyes.
I held her hand, careful not to touch her anywhere else for fear of causing more pain or accidentally jostling the ventilator.
That ventilator. What a love/hate relationship. It was keeping my child alive. And yet, it was also causing physical pain and other medical issues to arise.
Our NICU doctors were phenomenal and constantly on top of my daughter’s progress. They quickly discovered that the ventilator had caused some rips in my daughter’s lungs, causing air bubbles to form inside of her body in between her organs.
Soon after my daughter fell back to sleep, a group of nurses came in and made sure another dose of pain meds was in the IV before beginning the procedure to remove the air bubble.
They flipped my little girl over on her side, which briefly caused her to wake. She let out a small squeak and then her head rolled, out once again. The nurses paused for a moment and then inserted a large syringe into my daughter’s chest. Carefully, they began to suction out the air bubble.
And I absolutely lost it.
There was a huge needle inside of my child’s small ribcage. She was hooked up to a bunch of machines and there was no guarantee that she was going to pull through.
And it hit me like a bag of bricks.
I bolted down the hall and barely made it to the bathroom without choking on my tears.
Once the door was shut, I started sobbing. Full body, loud, snotty wailing. I’ll never forget what that was like.
Two days postpartum, sliding down the wall, curling into a ball, and hugging myself on the cold and dirty hospital bathroom tile. I had never felt such immense emotions or so completely out of control.
Following that awful night, my daughter started to make steady progress. By day six, we knew she was going to survive.
An army of doctors, nurses, respiratory specialists, family members, friends, pastors, and strangers battled to keep our child alive for the first 2 weeks.
We Knew It Would Be A Long Recovery
Nonetheless, we knew that we weren’t leaving unscathed. Multiple doctors and specialists sat down to describe to us the likely impact the NICU stay would have on our daughter.
She was supposed to experience withdrawal symptoms for close to a year after the fentanyl was no longer administered. We were told to expect significant learning and development delays.
On top of it all, the doctors found that my daughter had an underdeveloped hip due to laying on her side often at the hospital, as well as a hole in her heart that was caused by the pressure of the ventilator.
Both issues would require major surgery before our daughter turned five years old.
Thankfully, I’m so happy to say that both of these medical issues resolved themselves with physical therapy and time.
In the end, we got to take our precious baby home, for which I will be eternally grateful. Not everyone’s story ends like ours did and my heart breaks for the excruciating pain those families go through.
Then We Discovered the Food Allergies…
My daughter was 9 months old when we gave her peanut butter for the first time. I remember the pediatrician telling us to start introducing it into her diet and to watch for reactions. She had a spoonful of creamy peanut butter on a banana for her afternoon snack. Zero reaction.
Fast forward to my daughter’s fifth or sixth time of eating peanut butter. Literally within seconds, her face swelled up, she developed hives, and her lips started turning blue. We quickly gave her a dose of Benadryl and within fifteen minutes she was almost completely normal.
Note:
This story is to share our experience, not to provide steps on what you should do in the event of an allergic reaction.
At the time of her first allergic reaction, we did not have an emergency action plan to follow or epinephrine. Consult with your allergist on your emergency action plan for your child.
FARE is the trusted source of information about food allergies and they have an emergency care plan template here.
Knowing what I know now, I cringe at the memory of seeing my daughter’s face swell. Truly, we should have called 9-1-1 the second we saw her lips turn blue. We were so lucky her reaction didn’t worsen.
Over the course of that first year of life, our child was diagnosed with eczema, a peanut allergy, and a sesame allergy.
Eventually, she was also diagnosed with Dermatographia, a skin condition that results in hives from scratching or contact with an object that irritates the skin.
That adds an extra layer of complicated to my food allergy anxiety. When she turns red and hives appear, I have to determine if they are resulting from her environment or from an ingested food.
Talk about high stakes anxiety!
Medical Trauma is Real
My daughter is now five years old and I have had a lot of time to process through what happened to my family. I came to realize that I was living with a great deal of anxiety. Hence, I wound up seeking professional help.
My therapist might actually be an angel. She has helped me process through so much anger, fear, and grief.
She also walked me through the fact that I had experienced a highly traumatic birth, which resulted in significant medical trauma.
And that medical trauma was reactivated once my child was diagnosed with life threatening food allergies.
At first, I didn’t take the concept of medical trauma seriously. The NICU stay was over and done with. My daughter was alive – I should have been over it all, right?
But the more I learned and the more I processed, the more I realized that medical trauma was actually impacting me.
At one point, my anxiety was so high that I began having chest pains. Thinking that I had a heart or lung issue, several doctor appointments followed.
After a series of tests, the doctors determined that stress and anxiety was actually the cause of the chest pain.
What is Medical Trauma?
If you are wondering what medical trauma is, this article from VeryWellMind is a great read.
Basically, medical trauma has very similar symptoms to grief and PTSD. Anxiety, flashbacks, trouble sleeping, and depression are all signs that you might be experiencing trauma.
My counselor helped me connect the medical trauma I experienced with my daughter’s birth to the anxiety I feel about her food allergies. Every time I witness an allergic reaction, the image of my daughter with a ventilator in her mouth pops into my brain.
When I feel anxious or helpless about food allergies, the memory of me lying on the bathroom floor in a puddle of tears resurfaces.
When we have to go in for blood work and skin testing, I recall the time that they inserted a large medical needle into my baby’s chest cavity. And then once again, my medical trauma rears its ugly head.
Food allergies are challenging because they are a constant concern. You have to feed your child every day. Multiple times a day.
In addition, food is constantly present. Every social gathering, the playground, the pool, the amusement park, school, daycare, it is everywhere.
All of these situations are opportunities to reopen any medical trauma that is present.
What About You?
If you are reading this post, then chances are that you are curious about the topic of medical trauma or have experienced it yourself.
Many of you have witnessed your child experiencing an allergic reaction. Lauren and I have been there. It’s absolutely terrifying. And I’m so sorry.
Some of you may have had your child experience anaphylaxis, had to administer epinephrine, gone to the ER, etc.
Many of you have witnessed your child having a miserable experience with a blood draw for allergy testing.
Some of you have experienced the stress of an oral food challenge, perhaps even a failed food challenge, OIT treatment or other therapies.
And still, others, like me, have non-food related medical experiences (like my daughter’s NICU stay) in addition to experiences with food allergies.
What I’m learning is that these experiences DO have the potential for a psychological and emotional impact, not just medical.
And a lot of the time, we are unaware of that impact.
Reopening Medical Trauma
A particular challenge with food allergies is not just the medical experiences that can accompany the diagnosis, but the sheer amount of potential to reopen that impact. The opportunity is daily because we need to eat food daily. But there is also food introduction of siblings, food challenges, allergy testing, and the discovery of new food allergies.
For example, I was absolutely gutted when my youngest had an allergic reaction to a food.
I could not believe that both of my children would have food allergies. Every emotion about my daughter’s food allergies came flooding back, and I was devastated.
Lauren experienced the same thing when her youngest had her first reaction to a food. A couple of months later, Lauren’s anxiety got to a point where she was more aware of the presence of food and how her anxiety was becoming abnormal for her.
I knew I was experiencing anxiety around my daughter’s food allergies, but I hadn’t connected how my past experiences had been a part of that anxiety. And I certainly didn’t realize that it was taking a physical toll on me until I began experiencing chest pain.
The pain is real. The fear is real. Anxiety is real. Lauren and I are avid advocates of reaching out for professional support. And we both have done it.
Be Open to Counseling
Food Allergy Counselor is a wonderful resource. These are counselors who specialize in working with families experiencing food allergies and all the emotions associated with major life changes. Check them out here.
Remember, medical trauma can encompass many different experiences. The things that you live through, or watch happen, are worthy of your attention and care.
And all of those things, even if they are unrelated to food allergies, like my daughter’s NICU stay, can impact your experience with your child’s food allergy needs.
One of the BEST Ways That You Can Care for Your Child with Food Allergies is to Take Care of Yourself.
Food allergies are a life-changing diagnosis. And they impact not just the child, but the parent as well.
The emotional and psychological impact of medical experiences is real. And we want to lovingly encourage you to take care of this part of the experience.
You would never dismiss something that was emotionally or psychologically impacting your child. So this is a loving reminder to treat your own experience with care.
Your experiences matter. You, dear parent, matter. And you are doing an amazing job.
Some questions we would ask you if we were able to sit and have coffee together:
- How are you feeling about your child’s food allergies?
- How do you feel you are managing the anxiety?
- Have you managed a medical emergency with food allergies with your child? Are you doing ok? How are you processing this?
- How have the allergy testing (skin tests/blood draws) gone? Have you done food challenges? How are you feeling about those things?
- We both had physical symptoms that popped up that helped us identify the anxiety and stress (chest pain for Katie, stomach issues for Lauren), have you experienced this?
- How has it been navigating family and friends with your child’s food allergies? Do you feel supported?
- Do you need more support?
We Hope to Encourage You
Because we are not medical experts or trained counselors, we obviously cannot diagnose whether or not you are experiencing medical trauma.
However, we are hopeful that by opening up about our experience, we can reassure you in the fact that you are not alone. We wrote this to encourage you to reflect on how you are doing, check in on how you are processing, and offer more resources if you need more support like we did.
And if you do feel you need more support, we hope these resources help connect you to that.
Lauren and I are in your corner, always!
-Katie
What to read next: Food Allergy Grief is a Real Thing
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