So, the report is 13 pages long so I'm going to post in sections.
Each section will have its own post each day so make sure to come back and
follow us!!
Clinical
History: The decedent is a 35 week 4 day gestational age Caucasian (Caucasian?
I mean really? He is mixed race or at the very least African American!!) male
born to a 32 yr old mother on 9/23/11. The fetus was diagnosed with multiple
anomalies at 20 wks gestation including congenital diaphragmatic hernia,
dextrocardia, bilateral club feet, 2 vessel umbilical cord, abnormal
cerebellum, absent radii, & a single dysplastic left kidney. Chromosomal
& microarray testing was normal. The mother had been followed closely
during pregnancy by Maternal Fetal Medicine (MFM), neonatology, pediatric
surgery, & palliative care. She had delineated a birth plan, but wanted
intubation & compressions in the delivery room.
The infant
was born via vaginal delivery w/Apgar scores of 2 & 2 at 1 & 5 minutes
respectively. In the delivery room, he was immediately intubated by Dr. Brown
on the first attempt.The heart rate was 20. Positive pressure ventialtion
(PPV)with Neupuff using pressures of 30/6 were begun. The heart rate did not
rise so pressures were increased & mist was noted in the tube. PPV was then
given with a self inflating bag. Compressions were started at 2 minutes of
life. Calorimetric change was noted in the CO2 detector w/chest compressions.
Epinephrine was ordered via endotracheal tube (ETT) & was being prepared,
but heart rate increased to 80 by 6 minutes of life & >100 by 7 minutes
of life. The baby developed intermittent gasping respirations. Replogle was
placed to decompress bowel. Pulse oximeter was placed on his right foot. His
heart rate was 120-130 w/oxygen saturations in the 50's. At this point, Dr.
Brown explained to the patient's mother that the chance of survival was slim.
The patient was not a candidate for Extracorporeal Membrane Oxygenation (ECMO),
but was brought to the neonatal intensive care unit (NICU) for a trial of high
flow oscillatory ventilation (HFOV). Shortly after his admission to the NICU,
the patient developed bilateral subcutanteous air in the chest wall, likely due
to pneumothorax, despite the HFOV. The patient expired in the mother's arms at
1:34 am.
I can say
that if it isn't already a sensitive time for us, but to then read that my son
was classified as Caucasian!! Maybe to many this is no big deal, but to me I
was hurt by this! I mean clearly he is the spitting image of his daddy &
his a carbon copy of his grand father & they are NOT white!! He is BOTH!! I
saw the look on my husband's face & I saw the hurt & frustration from
this too. I mean how would you feel if a medical pathologist whom you would
think would either be able to tell scientifically that he was mixed or at the
very least they should've had the medical records from my delivery &
pregnancy. I mean didn't it say anywhere that Eli wasn't white unless I'm color
blind.. So , we requested for that be corrected.
So, I got an email today from genetic counselor & the spoke to the pathologist and they can't change the report to state that Silas is African American, but they can place & addendum on it stating that he is African American..
ReplyDeleteIt all depends where you are born. In Sc where my brothers were born they go by mother's race but in NC where my sister and I were born they go by father's race. So my brothers are white my sister and I are african american. But I agree with you I would prefer if it said I was mixed white&black. Because i'm both not just one, and it's upsetting they won't change it for you. Sending hugs your way.
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