Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

Going Home from the Hospital without Your Baby

01/10/2017 | Published by: Marty Barnes

Many of us imagine the moment when we will become a mom. We fantasize going into labor and racing for the hospital. We envision having our partner beside us while we push and scream with each contraction—and the moment the doctor hands us our baby for the very first time. 

We fall so deeply in love that our hearts ache. We imagine feeding them, bathing them, dirty diapers, late nights, and early mornings.  

I imagined all those things. 

When I found out I was pregnant in 2005, I was the happiest I had ever been. I spent the entire pregnancy thinking of the wonderful memories my husband and I would make with our baby. I looked forward to the first few months the most, but I anticipated all of the firsts: first word, first step, first day of school, marriage, even grandbabies. I had a healthy pregnancy and had no reason to think anything would—or could—go wrong.

But at 36.5 weeks, I was rushed to the hospital and had an emergency cesarean.  

A ruptured uterus led to a very complicated birth and put our daughter in a medical crisis. I was not prepared for anything that followed. I was thrown into a world of medical terms, procedures, and tests. The NICU staff told us that our daughter would not survive the night. That night became the week, then the month, etc. 

Every day, we were told to prepare for the worst.  

Following the difficult delivery, I too was in the ICU and closely monitored. But my husband and I would spend as much time in the NICU with Casey as we could. We would come back to my room during shift changes when they closed the NICU. During shift change, we would grab something to eat and try to process everything we had been told.  

On the third day, I was moved from ICU to post-partum. They gave us the room closest to the NICU. I remember being so happy about our new room. The ICU was on a different floor and now our sweet girl was directly across the hall from us. 

My joy did not last long. After a couple of days my doctor told me that there was no medical reason she could keep me in the hospital anymore. I had to be discharged.  

I was so consumed with my daughter’s needs and getting through day-by-day, the idea of being discharged never crossed my mind. Now, out of the blue, I was being sent home. I felt like the entire world fell out from beneath me.  

We spent as much time with Casey as we could before I packed up my room. The nurse came in with my discharge papers and a wheelchair. 

What came next is something I will never forget and something that I hope has changed or will change in hospitals.  

I was wheeled out to the curb and left in my wheelchair to wait for my husband to come around with the car. Leaving the hospital without my baby was crushing, but then to be left outside surrounded by all of the other mothers that were also being discharged was too much to handle. 

The other mothers were going home with their babies.  I watched as one after another buckled their baby into the car seat and then mom climbed in back next to the baby and off they drove with smiles on everyone’s faces. Why did they get the fairy tale and I did not?! Why was my baby upstairs fighting for her life and they are able to go on as if nothing has changed? My entire world will never be the same, and here they are happy and care free (just as I imagined I would be).  

I started to cry as I watched mom after mom drive off with their baby. It hit me though, “it really is a happy day for them.” They have no idea what I am going through, or more importantly, what my baby is going through. If the tables were turned, I would not want to see someone crying on my happy day. 

It took everything I had, but I swallowed my pain and did my best to hold it together and not ruin their moments. As soon as I was in my car, though, I could not hold it back any longer. The tears ran down my face as I sobbed the entire way home.

Many hospitals have started to discharge NICU moms at different times or through different doors. I really hope that more hospitals make this change. It’s so hard to leave your baby behind when you get sent home. Anything that can be done to make this awful process any better is a step in the right direction. 

Eventually, we did bring Casey home and the pain of leaving her behind was replaced with the joy of having her home. But the pain of leaving her that day will be with me forever.

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