June 09, 2011


I was fond of all of my clients. But there were a few that really tugged at my heart strings, even more than the rest. Erin was one of those. She was a beautiful baby girl that I had cared for since she was 2 months old. I remember very clearly the day I met her. It was just before she was discharged from the hospital. I went to visit her so I could meet her mom and dad, and learn some of her care. Mom was holding Erin, and she was smiling at her mother. I didn’t know this at the time, but that would not only be the first, but also the last time I’d ever see Erin smile.

Her condition quickly got worse after she came home. She was trached, and on the vent 24 hours per day. They did all kinds of genetic testing, but were never able to figure out what was wrong with her. All we knew was that it was a metabolic disorder.

She developed seizures, went into heart failure and got to the point that she no longer responded to anyone. She couldn’t track you with her eyes, she never looked at anyone. It appeared as though she were looking through you, not at you. She didn’t laugh or smile. She only cried or lay in her crib with a blank look on her face. She started having these sympathetic responses that were very sudden. Her little heart would race well over 200 beats per minute, I was scared she’d have a heart attack, and her oxygen sats would drop to less than 50-60 percent in less than 10 seconds. She would turn blue and we’d have to bag her with 100% oxygen while trying to calm her. It was scary. I loved that little girl like she was my own.

Now keep in mind, I am a firm believer in not treating special needs kids any differently than other children. Even though they have a nurse at their disposal all night long, other kids do not, and are expected to sleep through the night (once they are old enough to do so). So I really try not to intervene unless medically necessary. I provide the care they need, keep them comfortable, but try to let them be otherwise. I care for them, show them love, but I certainly do not coddle them. To treat these kids differently from other kids really does a huge disservice to the kids and their parents.

But Erin was different. She was never going to recover and I knew she would not survive. She was getting worse every day. So for months I just held and rocked her all night long and gave her as much love as I possibly could. She never responded to me and I often wondered if she knew she was loved and knew that we were all there for her.
Eventually the parents made the decision to make her a DNR and made the agonizing decision to remove her from the vent. They decided to wait until just after her birthday so that she would at least live to see her first birthday. Erin kept getting worse and fell into a coma. We didn’t think she’d make it much longer. It was heart-breaking, but unlike with Gary, I was determined to stay and help that family. I was NOT bailing.

I had the night off and I was at home relaxing with my family.  I got a phone call from the regular day shift nurse. Erin had just passed away. We knew it was going to happen but I was still stunned. I cried and cried with the other nurse on the phone. She was only a week away from her first birthday.
I was still crying, but got it under control as best as I could as I drove to their house. I was very unsure of myself, if I should really go to see them, and wasn’t sure if the family would want me there or not. I was scared of imposing on them since I technically wasn’t working, and I certainly wasn't family But I couldn’t stay away. I cared for the family just as much as I did for their daughter.

When I got there, the family embraced me, hugged and kissed me, and thanked me for coming. I had made the right decision. We were all crying and it was so so sad. The physician was just leaving when I got there, he had pronounced her, and she was already removed from the vent. It was so eerily quiet without the sound of all the equipment running. All you heard were people crying and hushed voices. The family had decided to wait to call the funeral home so that they could have those last moments with their daughter before they came to take her to the funeral home.

At one point I sat down in the rocking chair where I had spent so much time rocking her each night. Mom brought Erin to me and placed her in my arms. I got to hold, kiss, and rock her one last time. I know this sounds so sad, and maybe even morbid to people who don’t understand, but I will forever cherish that memory. That family gave me their daughter during their precious last moments with her, so that I may hold her and say my good-bye’s. I will always be grateful to them for allowing me to have those final moments and for allowing me to be part of their lives.

In a way it was a blessing that she passed on when she did. It spared the family from having to face removing her from the vent and letting her go. This awful decision was taken out of their hands. I'm glad they won't ever have to live with the grief or possible self doubt over the decision to take her off the vent. This family endured something so tragic and fiercely loved a child they will never see grow up. I can't even begin to imagine what that is like. I'm just glad I could be there, and help in whatever small way I could.

Before I finally left for the night, Erin's mother gave me my Christmas present since I wouldn’t be back. It was a beautiful ornament with Erin’s picture in it. I hang it on my tree every year.


rnraquel said...

I'm so sorry. You really did help them. I'm glad she never knew anything but love. That is a beautiful gift.

NP Odyssey said...

That is heart wrenching