Monday, July 14, 2008

APGAR 0, 0, 0, 2

The neonatal resuscitation protocols include suggestions for when to discontinue efforts:

Infants without signs of life (no heart beat and no respiratory effort) after 10 minutes of resuscitation show either a high mortality or severe neurodevelopmental disability (LOE 5).106,107After 10 minutes of continuous and adequate resuscitative efforts, discontinuation of resuscitation may be justified if there are no signs of life (Class IIb).
That suggestion wasn't included in the original protocols. Children like Edie are the reason that suggestion was added to the protocol.

Her mom had a normal pregnancy and most of her labor was uneventful. Unfortunately, she delivered in a small hospital which did not, at the time, have in-house anesthesia coverage for emergency C-sections. Something went terribly wrong and he had no heart rate at delivery.

By 1 minute, his APGAR score was still zero - no heart rate, no respiratory effort, no reflex response, poor muscle tone, blue or pale. By 5 minutes, still no heartbeat. At 10 minutes, the pediatrician was still desperately trying to save the baby -- but still no signs of life. Finally, sometime between 10 and 15 minutes, Edie had a heartbeat -- and nothing else.

Edie was a beautiful baby, but she never moved spontaneously. A month later, she might gasp when disconnected briefly the ventilator for suctioning, but generally she didn't even do that. Her parents visited every day. They held her, talked to her, took pictures for their memory book. They hid their pain from most of the staff -- to the point that many believed they were in denial. Those of us who had quit trying to 'orient' them were privileged to share their pain, though. They knew it was just a matter of time and were determined not to waste their precious moments with this child crying at her bedside.

A few months later, Edie got septic and her parents agreed that resuscitating her if her heart stopped would not be in her best interest. She died, more or less peacefully, a few days later.

The other babies I've seen with 0 APGAR scores at 10 minutes survived only a few hours or days. I don't remember another who survived even a week.

It's very difficult to make the decision to stop resuscitating a full term, or near term baby, especially if the mom was in the hospital being monitored so we know the time that the heartbeat stopped prior to that emergency C-section . I've seen many babies respond to the Neonatal Resuscitation Protocol and go on to do very well. Those babies virtually all have had APGAR scores increasing by 5 minutes, and the rest definitely had signs of life by 10 minutes.

That suggestion to consider discontinuing resuscitation if it has been unsuccessful after 10 minutes makes a lot of sense to me as I sit here typing. In the adrenaline-laced atmosphere of a neonatal resuscitation, it's hard to put it into practice. I'm always grateful that the final decision is not mine.


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Sarah M. said...

That's beautiful, in a sad sort of way. I hope those parents found peace. It sounds as though they did.

Thank you for sharing. I can't even imagine how hard it must be to be the medical staff who has to make that decision.

Anonymous said...

My daughter was revived after 7 minutes and 45 seconds without oxegen and her life story will soon be in print "Unplugging the Lies Jennifier's Story". She lived for 20 months 17 days at home. I was the first single parent to take a child home under her extraordinary health conditions in Canada. The last time I tube fed her she aspirated I would never trade those months for anything. It is now 20 years since her death and after experiencing first hand the trauma of hypoxia I don't believe if Jennifer had not breathed until 11 minutes if I would have loved her any less. My precious child had severe brain damage but by the end of her life was able to smile, laugh, reach for a toy and follow one with her eyes. She was never able to eat, always tube and gavage fed, never rolled over, never craweled, nor walked but the impact of her on my life as a 20 year old single parent shaped my entire life. Has it been difficult? Not a cake walk but I truely believe that God does never ander any circumstances give you more than you can handle and I thank God every day for the gifyt of Jennifer.

Judy said...

Thank you so much for sharing your story with me.

I doubt that Edie's family would trade one minute of her life away either.

Please let me know when and where your daughter's story is published. I would love to read it.

Anonymous said...

Thank you. I will keep you posted as to when it is published. We are believing by Aug 2010. Today I have recieved her medical files from all hospitals involved in her care from 20 years ago almost a thousand pages to read & interpret. They will be used as a means of truth. I'm almost scared to open them. I was a single mom on welfare at the time of my daughters life and not an RN. I know RN's are to keep there notes objective but I also know this is not always the case. I only pray they have been kind. Remind all RN's you work with that those files may bee read in 20 years. I know some of them don't get it as I did recieve some extremely negative sympathy cards from hospital staff. I truely believe if you have nothing nice to say about a mom whose child has been in your care don't send a card.
God Bless !!

Judy said...

If you need help interpreting those notes, I would be happy to help. You can contact me at the email on the blog.

Anonymous said...

Just came back from a shift at the local district hospital here in Rwanda. Baby born with APGAR of 2. Did resus, Positive pressure vent, continued for 45 min because there was no doctor who knew neonatal resus available. (I'm a midwife, training midwives here) I continued until the anesthesiologist came to intubate. Baby had great heart rate respiratory effort, aside from occasional (every 8-10 min) gasps. He's in NICU now, breathing on his own every 30 sec or so...but there's no ventilator and they've stopped PPV. Sad case. Beautiful boy born to a first time mom. Severe hypoxia.
Couldn't stop without doc calling and no doc was available. Having that protocol in place is a good idea...makes taking a decision to stop a little easier.

Judy said...

That is a very sad situation. Baby with good heart rate isn't one for whom we'd stop resuscitation efforts. We have the same requirement for a physician to make the decision to stop resuscitation, but in hospital settings we have OB, anesthesia, and pediatric providers to make the call if needed.

We do have ventilators here, so we would be obligated to maintain the baby on one while he was evaluated. We have withdrawn life support (with family's permission) in situations such as you describe, but more commonly, ventilator support is continued for days, weeks, sometimes months. I'm not sure which is harder on the family - immediate loss or long-term ventilator support followed by loss anyway.