I was filling up the survey Barb sent me regarding hospital care for babies born with Trisomy 18/13.
I went back to take a look at her medical records and this is what I found:
"In the event of cardiac arrest, baby is NOT FOR RESCUSCITATION."
Not for rescuscitation.
In block letters for emphasis.
Even though upon discharge, Vera was in no apparent grave situation.
"Condition on transfer quite stable on room air."
There was no mention of surgery options to address her large PDA. Nor follow-up tests to ascertain if she did indeed have central or obstructive sleep apnea - what would cause the much-feared "turning blue". We were not taught to give CPR if she "turned blue".
We were asked to sign a DNR and we did. We were told that it is valid for 48 hours.
I'm afraid that this is the protocol of most hospitals in the world for Trisomy 18 newborns.
9 comments:
hey... tis is really weird. i hv requested frm a few docs in the same hospital since rac's birth to allow me to sign the DNR but they hv always rejected me on the pretext tat there hasn't been a "grave situation". guess it really depends on which docs you meet. gd luck for the op, vera!
with luv frm auntie rae & jiejie rachael.
This is quite a discovery May.
An international committee gathers every 4 years to revise best practice recommendations for resuscitation. In some cases, they recommend no resuscitation be attempted. Infants with confirmed trisomy 13/18 are in this category. The guidelines give the reason of "unacceptable morbidity."
I am keen to know...what is the meaning of "unacceptable morbidity"?
I can very much relate. When our Anabelle was born with T18, not knowing the diagnosis before her birth, but banking on the idea that's indeed what she had (I refused the amnio) they had to by doctors ethics treat her as if she was any other baby with breathing issues at birth. Of course, after she was born, diagnosed, suddenly we went from, what to do to help her live, to leave her alone and let her die. I was furious. Angry is just not the word. I fought, yelled, screamed, slammed doors and walked out on doctors many times. They reasoning, though valid, was making me angry because they rather live based on statistics rather then the capability of each individual case.
After 6 years, I am still glad I fought so hard. Giving my daughter every chance possible. Because sometimes, their is a miracle in every life. Your little one and so many others with T18 that have lived beyond exception is a test to that.
Hugs to Vera
Kiley Rodrigues
United States
Rhode Island
So crazy that this can happen without our knowledge. Thank you Barb for your passion that changes so much due to Annie's life and journey.
May, good luck with operation.
I'm very surprised, I've always thought that DNR is the choice of the parents, not the hospital/doctors.
Yes it is the choice for some parents. Especially when they prefer not to prolong the agony and pain of a baby that has several severe issues at the present. In Vera's case she wasn't having any immediate issues (breathing well on room air, no need for immediate surgery), But the severity of the diagnosis "Trisomy 18" blanketed her regardless of her true current situation. Medical practioners need to realise that life expectancy can vary depending on the issues presented at birth, and advise parents accordingly.
May, that's just terrible. Just because of her diagnosis the hospital policy is a DNR? Especially since she was breathing well and had no immediate issues at birth. Hope Vera is home soon, take care May
Thanks Jillian.
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