Emma's Story: From NICU Mom to Patient Advocate

Embree Thompson
August 31, 2022

At only 32 weeks pregnant, she was at the hospital, bleeding and 7 cm dilated.

Only 4 days ago, she was told that she was healthy and everything looked fine. Now she was preparing to give birth to her baby two months earlier than expected. “They couldn’t give me anything to slow the labor, so I was already in shock. All of a sudden I have a baby. I’m a mother.” Emma gives birth to a baby girl, but her time with her is immediately cut short. “I think I looked at her for a second, then they swiftly took her away. They ended up telling us that she was okay but needed a lot of intervention.”

In the midst of the confusion, her midwife turns to her and tells her that her baby is going to be in the neonatal intensive care unit for about a month. “I just remember giving her a dead stare and being in complete disbelief and in utter shock. My body was completely freaking out because they ended up giving me an epidural just to calm me down. I had the shakes. It was just a very crazy, very fast, very scary experience in the middle of the night.” Emma was allowed to hold her baby for the first time almost 24 hours after she had been born. Still in shock, she mustered all the control she could to attempt to keep her composure. “I just remember being totally fine to completely sobbing.”

In the US, 10-15% of all newborn babies are admitted to the NICU every year. Although statistically an admission is not uncommon, the experience can leave mothers with a feeling of total isolation, shame, and guilt. For mothers like Emma these feelings are all too familiar.

“Because she was 32 weeks and not 24, or 26 or even 28, everybody was telling me, ‘You’re fine, she’s fine. This is just a bump in the road. Everything’s fine.’ Meanwhile I’m completely losing my mind. I felt like such a failure and felt so guilty. Why can’t I keep her safe and how am I supposed to even be a mom to this baby that’s now in the hospital?” Unfortunately for Emma, the isolation continued throughout her baby’s hospital stay, making an already emotionally taxing situation even harder to bear. “I wish that someone had said you have postpartum depression and anxiety. Someone needs to ask moms these questions. But no one did.”

Emma did find solace in her lactation nurse who provided her with emotional support. “ She basically became like my best friend. She was my shoulder to cry on a daily basis.”

Many parents may find it difficult to know their rights within the hospital setting. With the whirlwind of events and emotions at the time, mothers may find difficulty orienting themselves to their options. “I learned after I left the NICU that I could have asked for specific nurses. I didn’t know that. I had a couple of nurses that I really did not like. I would have really appreciated knowing that because by the end, I really didn’t like being around the nurses who couldn’t care less that I was still kind of struggling because my baby was ‘doing fine’. My baby was still in the hospital and I wanted her home with me.”

These circumstances not only affect the mother but the other parent or caregiver also bears the burden of distress. “My husband was there with by my side the whole time, but it was basically me and him and a couple of people against the world, because all of our friends at the time either didn’t have kids and had absolutely no idea what we might be going through.” 

Emma found herself struggling to produce enough milk for her newborn baby.

“All I did was feel bad about myself. I wasn’t sleeping. If I didn’t pump every 3 hours I thought ‘I’m failing my child, I’m failing my nurses, I’m failing everybody.”

After her daughter was discharged from the NICU, she was finally able to bring her home and begin the process of bonding. However, Emma found herself struggling to produce enough milk for her newborn baby. “All I did was feel bad about myself. I wasn’t sleeping. If I didn’t pump every 3 hours I thought ‘I’m failing my child, I’m failing my nurses, I’m failing everybody.”

If anybody had asked me that, they would have freaked out because all my answers would have been ‘all the time’. Are you crying? All the time. Are you nervous? All the time. I didn’t even know about those questions until less than 2 years ago when my therapist told me to ask my physician.”

The aftermath at home

After her daughter was discharged from the NICU, she was finally able to bring her home and begin the process of bonding. However, Emma found herself struggling to produce enough milk for her newborn baby. “All I did was feel bad about myself. I wasn’t sleeping. If I didn’t pump every 3 hours I thought ‘I’m failing my child, I’m failing my nurses, I’m failing everybody.”

“My job [was] to pump, pump, pump, and sleep and rest and eat and just try to make milk. And she was two months early so she basically slept for 3, 4 months. That’s pretty much all she did. So for the first two weeks I didn’t really hold her, she wasn’t really use to being held. It was depressing. I probably didn’t really start feeling bonded with her until she could smile at me which I remember was not until December, and she was born in August.”

In the midst of adjusting her daughter, Emma found that outside of her own struggles, life continued to happen all around her. “My mother was going through chemo and my nephew was born with a neurological disorder. So I just didn’t have anybody to talk to.  In my mind, I wasn’t allowed to be sad because everything was still ‘fine’. It took years for me to realize that I was not fine and able to admit that. I was just in survival mode.”

Emma’s experience with her first baby gave her pause when considering expanding her family. With everything that had happened, she was hesitant about risking the possibility of enduring that all over again. With help from her therapist and mental health medications, she gained a renewed sense of confidence that she could give birth to another healthy baby in the future.  Starting therapy and SSRIs completely changed everything. I definitely wouldn’t have another kid right now if it weren’t for finding the right therapist that I trusted.”

Looking to the future...

Now, as a mother to two healthy and beautiful daughters, Emma sees hope for the future in providing support for mothers who struggle with feelings isolation and loneliness when their children require extra medical attention. “In the pediatricians office, every time I bring in the baby, they have a mental health checklist, which they did not have 5 years ago. Everybody’s more open to talking about mental health, and I could sense that it was better.” 

Reflecting on her past experiences, Emma has discovered an appreciation for social and emotional support that was not available to her when her daughter was taken to the NICU. She hopes that other moms who have a similar story, understand that they are not alone in their experience. “I had no one to talk to who knew what I was going through. Find other moms in the NICU that are currently there or at the very least have already graduated. I would just hope that other people can meet because I think that could be a great help.”

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