Our newborn had a blood test performed at 8 days which showed very elevated bilirubin levels of 450. Phototherapy was started immediately which was effective in reducing the levels to normal range. I have two questions:
Given the high level of bilirubin, what are the chances of permanent brain damage? Based on doctors assessments, they did not find any indication of Kernicterus but I am concerned that issues may arise in the future. We are scheduled to have several neonatal assessments for the first 3 years of baby's life to monitor for any developmental delays.
Could more have been done to detect the high bilirubin levels earlier? We were discharged from the hospital within 48 hours with low-intermediate risk of jaundice. Following the hospital discharge, our midwives ordered the first blood test on day 8, which showed the bilirubin level at 450. Is this normal practice or should a test been performed earlier?
At least in our country, hospital informs parents to watch for skin yellowing of the baby and informs to contact your pediatrician asap if you notice intense yellowing for the next steps. So, it depends whether you have been informed fully and what are the usual practices in your country (perhaps try asking in your local mom group online).
I cannot answer that, perhaps someone else can. As parents we always want to know that our kiddo will always be healthy and happy, but only time will show. You can only enjoy today, love you LO and patiently see what the future holds.
My conversion for bili was off - 450 umol is 26 mg/dl which is high but not super dangerous.
What were levels at the hospital at discharge? Any increased risk factors like rhesus mismatch?
Here in the US we got tested three times, did photo therapy and then tested again at 3 and 7 days. Level never went above 14 mg/dl so it was overabundance of caution.
At discharge, the direct test for ABO incompatibility was negative. Bilirubin levels was 135 umol/L at discharge. However, when the bilirubin levels spiked later on day 8, they did an indirect antiglobulin test which was positive.
Baby was also just shy of 38 weeks, which is a risk factor. Also, baby is exclusively fed breastmilk and Asian ethnicity.
I am very concerned as the doctor advised us that the bilirubin level was extremely high and was well beyond the blood exchange level. Although the baby responded well to phototherapy, I am concerned about potential brain damage. I read online that 25 mg/dl is when it gets super dangerous. Also, since a bilirubin test was not done until day 8, we do not know how long and how high the bilirubin levels may have been prior to day 8.
@kwikfixn Yea that sounds like bad advice. With more than 2 risk factors and and trending increase in levels, they should have scheduled a test 24 hours post discharge.
I don’t know if you have any legal recourse, you might. Hopefully your baby is fine and nothing comes of this, but I’d reach out to a lawyer just in case.
That being said, in studies of newborns with elevated levels such as you saw, they didn’t find much evidence of any brain damage or developmental delay except in rare cases with additional risk factors.
In this study, researchers compared 140 infants with bilirubin levels of between 25 mg/dL and 30 mg/dL, a level reached by only about 1 in 700 newborns, to more than 400 control infants.
The researchers followed the children up to five years of age, measuring IQ, performing neurological exams and interviewing parents. They found no significant difference between jaundiced and control newborns in IQ or behavior, or in the proportion of children with abnormal neurological examinations, or with neurological diagnoses.
