As we all know, Scotty's bilirubin levels at the hospital were 28.9 at admit, and it dropped within 36 hours to 12.8. While initially we thought he was a fairly straight-forward case of dehydration and jaundice, what I didn't know is that we will not know if there are any long term effects to the high bili levels until he is 4 months old. Some cases are diagnosed as late as 18 months. We really won't know until Scotty starts hitting (or missing) his developmental milestones.
Kernicterus is a disorder that results from high bili levels. What is considered high? It all depends on the baby. Kernicterus happens once the bili crosses the blood barrier in the brain, causing PERMANENT NEUROLOGICAL DAMAGE. PERMANENT. Let me say it again: PERMANENT. Once that toxic bili seeps in, there is no going back. Resulting conditions include auditory processing problems, athetoid cerebral palsy, gaze and vision abnormalities, mental retardation and even death.
What I found most interesting is that kernicterus was labeled as a "Never Happen" Event by the Centers for Disease Control in 2000. A "Never Happen" Event is just that - it should never happen. Kernicterus is 100% avoidable and preventable - as long as it is caught in time. And it is not up to parents to catch it - it is up to hospital professionals and pediatricians. Bili levels MUST be taken in order to determine what level of treatment is necessary. Phototherapy (the lights) is one treatment, as is the bili blanket, and exchange transfusions (swapping out the baby's blood with cleaner blood) are also used.
Also found in my research: many cases of kernicterus are under-reported or not reported at all (making it seem much more uncommon that it is) due to the HIGH LEVELS of litigation that ensue after a kernicterus diagnosis. Ligitation - i.e. someone is getting their pants sued off of them. Based on what I found, we're talking about $5 million dollar settlements and up. The money is necessary for treatment, therapy, and ongoing services for the affected baby. For the rest of his or her life. Once again, I want to highlight - this is a totally preventable disease. And if it happens, it appears to be the result of malpractice. Doctors and hospitals did not order the appropriate tests, bili levels spiked, and a little baby's quality of life was lost forever.
The reason I am writing about this is because I don't want anyone else to ever experience one ounce of the panic Brian and I have felt since August 26. For anyone that is reading this, please tell every pregnant woman you know: insist on bili checks. Insist on it. Tell your hospital/post-partum nurse/pediatrician that you want bili levels checked frequently (daily, hourly, if necessary). You want blood tests (it's just a prick on the heel of the baby) to confirm that levels are normal and not rising. Insist on this for the first few days, and follow-up frequently.
Perhaps the scariest thing I read is that the majority of kernicterus cases happened within 3-4 days of life. These little babies never had a chance. With hospitals discharging mothers within 24-36 hours after birth and relaxed attitudes toward jaundice, these babies' levels spiked on Day 3 and the families were back in the hospital on Day 4. Because much of toxicity of the bili depends on the baby's weight and age, younger babies don't stand a chance. I found that the determination of doing the exchange transfusion is based on the baby's weight in grams divided by 100, and then compared with the bili level. So, for example, Scotty's admit level was 28.9. His weight at the time was 7lbs, 6oz (or 3400 grams). 3400 / 100 = 34. If you remember, the neonatologist told us upon admit that "34 was the number of no return." That's how she came up with it. So, a little baby that is only 1200 grams (about 3lbs - premature, low-birth weight) only needs a bili level of 12 to be extremely dangerous. Your average 6lb, 12oz baby (2772 grams) only needs a bili of 27.7 to be at serious risk. Combine that with the fact that the baby will probably lose weight in the first week of life (common), perhaps down to 6lbs (2376g), and all of a sudden, 23 is the magic number.
That's why it's tough to predict what babies will be affected by kernicterus and which ones will not; it's all relative. And younger babies have a less developed blood barrier in their brain, putting them at even greater risk.
Babies that are exclusively breastfed are also at greater risk, since breast milk contains the mother's bilirubin. What is interesting is that I have 5 books on breastfeeding - and not a single one of them mentions kernicterus. All five books mention jaundice, but all five claim that increased breast-feeding is the way to get rid of jaundice. Technically, yes, but in my case - no. Breast feeding simply contributed to the problem. Scotty wasn't getting enough milk to help him pee/poop out the bilirubin, and so it built up in his system. The higher the level of bili, the more lethargic Scotty became. The more lethargic, the less he wanted to feed. And so, the less he peed/pooped. Had I used formula, it would have hydrated him, giving him more food to pass through his GI, and pushed more bili out.
Not surprisingly, all five books are currently in my 'burn' pile and will likely be used as kindling later this winter. As will every business card related to a lactation consultant who told me "formual is poison."
There is a fantastic online support group out there called PICK - Parents of Infants and Children with Kernicterus. www.pickonline.org. Please check it out - they have all kinds of great info listed, including what babies would be considered high risk for jaundice. Some of those risk factors include:
- born via induction
- moms with gestational diabetes
- babies that lose a lot of weight right after birth
Also at risk for jaundice:
- if there is a sibling that was jaundiced at birth
- if bruising happened during delivery
- pre-term babies (born before 37w)
- feeding problems (baby is unable to latch on, has problems swallowing)
- Blood incompatabilities (Mom is O, baby is not)
- early jaundice (yellowing within 24 hours after birth)
- heredity, mainly Mediterranean or Asian families, since it is harder to see the skin color correctly.
All of these risk factors warrant a HIGH level of supervision and monitoring. Looking back, Scotty was a boy, born via induction, lost a lot of weight right after birth, had early jaundice, and had serious feeding problems. My milk also didn't come in until Day 5, putting him behind the 8 ball almost immediately. Again, all of this was reported to our pediatrician at the first visit, and yet she did nothing. No blood work, no two-to-three day follow-up - nothing. And four days later, we were in the ped ER, practically hysterical. Four weeks later, I am still trying to calm my mind and not fall to pieces everytime he doesn't wake for a feeding or has a weird look on his face.
I grilled our new ped yesterday about the likelihood of Scotty having long-term effects as a result of all of this, and she said that had she not known his history, she would have thought he was a normal one-month old infant. He passed his auditory brainstem response test prior to discharge from the NICU, and is showing appropriate head control during tummy time. He also is tracking objects with his eyes and is making grasping motions with his hands. Thank you, God. Brian and I feel insanely lucky that we may have managed to avoid this colossal pit-fall. She also suggested I consult with a pediatric neurologist for more peace of mind, and I plan to follow-up on Monday. I can't believe we will not know for certain until he is almost two years old, but as for right now, things look okay.
I cannot even describe the roller coaster of emotion that I have felt since the word 'kernicterus' came into my vocabulary. Please do not let this happen to your child or anyone else's child that you know. Please talk about this with your friends and family. As I told our first pediatrician (when I asked her why this info is NOT listed in jaundice pamphets), she said, "We don't like to scare our new mothers." Well, what is scarier? Hearing about a potential neuro-toxin or having to monitor your child for developmental delays? Seriously.
And interestingly enough, when I initially posted about kernicterus at the end of August, my sister (mom to Ben) read the warning signs and became concerned. Ben is a boy and lost a lot of weight after birth. He appeared yellow even at 13 days old (when I posted the info), and Kelly took him in that day to have his level checked. It was 14.7. High. Not high enough to be admitted , but high enough to warrant monitoring and possible formula. He's doing great now, as is Kelly, but again, knowledge is power.
Please share this with everyone you know. If any of my facts are wrong, please let me know so I can correct them. I am not a doctor and am just trying to summarize the enormous amount of information I found on this topic. And please continue to keep our little bear in your prayers, along with every child affected by this disease. It is truly a tragedy (and abject failure of our medical community) when kernicterus happens.