I wrote most of this in 2015.
My daughter was born with a congenital diaphragmatic hernia (CDH) in 1999. She was in the NICU and needed surgeries, transfusions, ECMO (Extra Corporeal Membrane Oxygenation). She was there for five weeks. The average time (at that time) was 3 months (I don’t know about now). The nursing staff said that girls survive more than boys*.
During this time, my mother woke up around 2-3 am with the feeling that my baby was very hot. (She was an hour away.) She called me on my cell. I was usually found in the nursing/breast pumping room at that hour. I spent most of my time in the NICU. I went to find out and the nurse on duty had the bed’s heater turned way the eff up.
The temperature was corrected, but NOT before it was recorded that the baby had a “fever.” This translates as: hot = fever = antibiotics.
The doctor, after simply reading my baby’s chart, insisted that she be given Vancomycin or Gentamicin (I can’t remember which one, but I think it was Gentamicin). This is BEFORE any culture results from the lab. Both of these are called aminoglycosides. My mom (RN), told me that Vancomycin and Gentamicin may cause permanent hearing loss and to avoid.
It is no wonder, after reading about survival of babies with CDH, many have cochlear implants (approximately 100G per ear). There was a study in 1998 on the high percentage of CHD patients with hearing loss (High prevalence of sensorineural hearing loss among survivors of neonatal congenital diaphragmatic hernia. Western Canadian ECMO Follow-up Group / PMID: 9831145), which you'd think from the paper is attributable to ECMO.
It has long been known that the major irreversible toxicity of aminoglycosides is ototoxicity.
Naturally, I flat out refused the aminoglycoside. My husband at that time (now ex) was forceful and explained that the bed was hot. We prevailed. The lab results came back negative the next day. She was hot from the bed, not a bacteria.
In addition, the NICU staff were insistent that our daughter NOT be fed through her mouth but rather through a tube, even though she could swallow. We lied to all the nurses and said that the doctor had ordered PO feeding (thank you Mom). Our daughter started drinking my breast milk that I had previously pumped.
It is no wonder that many children born with CDH spend much longer in the hospital. I had to hover over and be forceful. When the perfusionist looked intoxicated and behaved oddly while working with my daughter's intubation tube — while my daughter screamed in silent pain — I yelled at him loudly. He never came back.
I had private insurance. After this ordeal I got bills for thousands out of the blue, things I didn’t see happen and procedures never approved of by my insurance. My response was to write "f*** you" (all spelled out) on the bill and send it back. I never got bugged again.
*The extra X chromosome makes females more resilient. See:
Women’s genetic superiority has absolutely nothing to do with the size of their gametes. Instead, their survival advantage is rooted in the fact that they have XX chromosomes and not XY.
This is called the Law of Homogameity.
— Shäron Moalem MD, PhD (Physician-Scientist, Geneticist)