Jamie Gash
Countless errors took place. Four-week-old son developed sepsis (urosepsis with hyponatremic dehydration). Age 4 weeks he breastfed poorly at 2400 and 0600 hours, rang “Healthline.” about 0630 hours. They were only mildly interested in 2 poor feeding events and my stating of a multiple high temperatures with a skin scanner…”not always accurate” they said.
History – A slightly enlarged right kidney was seen by student radiographer at 18 week scan in utero. Her boss played this down. Another scan at 36 weeks also confirmed an enlarged right kidney. Was advised at birth that baby would receive ultrasound before being discharged after being born. Advised on Day 2 after birth that I needed to go home and that son’s ultrasound would be “done soon as an outpatient.” Ultrasound was cancelled without informing me or the paediatric team, as the radiologist “couldn’t see it was necessary”. So at age 4 weeks after the poor feeding and temperature, I visited GP, advised to go to ED. His eyes were now rolling upwards, staff were not concerned, with upward rolling eyes, stating his “respirations and fontanelle were fine” and placed us in a non urgent waiting room. In fact he had polyuria as he had urosepsis and hyponatremic dehydration, critically this polyuria mimicked being well hydrated. Sodium level was 106 mmol/litre, ie not really compatible with life. A person, especially a small baby, putting out continuous vast amounts of urine without tolerating any input is not well hydrated, they are dangerously dehydrating. He was about to go into cardiac arrest. Every staff member I told and showed this drenching urine output to was not concerned. They presumed that an ongoing vast volume of urine in a sick baby purely indicated “good hydration” even though he wasn’t well enough to drink for many many hours now.
Needed 2 nights ICU after a panicked difficult IV insertion, fluid resus, multi antibiotics, lumbar puncture, brain wave monitoring, eventually returned home on antibiotics after 1 week hospital plus scales sent to our home for daily weighs. Found to have a 3rd malformed ureter and malformed right kidney. This could finally be seen on renal ultrasound in ICU only after he was rehydrated.
The few hours prior ultrasound in ED could not visualise the kidney issue as he was so severely dehydrated. Had an operation at 1 year for partial right nephrectomy and removal of deformed extra 3rd right ureter. Further operation at 6 years after UTIs developed and the deformed cavernous opening in to the bladder “stump” from the previously resected deformed 3rd ureter was “tidied up” plus bilateral reimplantation of ureters and circumcision performed “to lower infection risk”. He made a full recovery but it felt like we were minutes away from a very different outcome. And that’s our story ! I hope this helps get a different outcome for someone else.
Source: Jenny Gash writing for son
