We have a "hospice room" on the pediatric floor where I work. SMA just claimed the life of the last patient in it. So very sad for all involved. I cannot even imagine the depths of their grief.

Awful disease, and always fatal when diagnosed in an infant.

I never saw this blog. But unfortunately for me, this is part of what I do for a living. Never gets any easier. Just makes me appreciate my own babies all the more.

I'm sorry Polly.

Yes, I saw that Tina! Very sad.

Polly, you're doing amazing work! There are happy stories that emerge out of your unit too, fortunately. I'm sure you'd agree that babies are saved in the NICU today who 10 years ago would have perished. Focus on those wonderful outcomes!

OMG, my heart just goes out to her parents, all the parents who loose a child like that. It's so devastatingly sad, what a beautiful little girl she was.

How incredibly sad! My heart goes our to her family. What a tragic, devastating disease.
Lynn

I just looked at the blog an he just informed everyone.

This must be nearly unbearable for her family, how very, very sad.

Stinky- I certainly do focus on the happy endings in NICU. It's what has made me stay for 14 years!

I'm so glad you feel that way Polly. I've seen how hard medical staff, particularly nurses, work in the NICU, and it's quite impressive, to say the least. Also advancements in treatment modalities for these tiny patients is awe-inspiring. I'm sure you have to do your homework to keep up with it all.

I believe that very difficult, challenging conditions like those presented by babies like the "bucket list" baby, bring out the best in the hospital staff. We can see and feel God's presence in the loving efforts taken by the medical team (and family) to care for them.

Don't ever lose sight of how the great love shown by you and your peers is incredibly redeeming and healing; even in the midst of such pain and anguish.

Sorry to hijack- but thank you so much stinky. Those are really touching words. I am often the "invisible" part of the team, since I'm not a nurse OR a doctor, and usually the part of what I do the parents never see.

There are so many babies I've resuscitated in the delivery room, and the parents have no idea who I am or what I did, so I don't hear it often from my patients parents. What I will say though is the greatest advancement I've seen in my career is therapeutic hypothermia or "head cooling." Years ago a resuscitation after birth asphyxia led to either the withdrawal of care and death of the baby or a severely brain damaged baby with subsequent life long serious health issues. Since we instituted head cooling, these babies are going home feeding and hitting all their milestones. It makes me love what I do all the more :) I don't really need the recognition, just knowing the baby has a shot at a real life.

As the grandparent of a NICU baby, thank you Polly and the many caregivers that work in these wonderful units. While there are lows in this profession, there are more highs. Our little guy is now a very healthy 2 year-old.