How would you explain this scenario to a mother

[luysion]

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Hey guys, so today I was asked to do this during a role play with an attending, I seriously blanked.

How are you suppose to explain haemolytic anaemia of the newborn to a non-medical person? Or the mother in this case? Any help would be greatly appreciated. Thanks! This was the case

"You are called by a GP who has seen a 4 day old infant who is jaundiced. The infant is described as sleepy but feeding well, with 3 wet nappies in the past 12 hours. Bloods were taken by the GP two hours ago with the following results:
Serum bilirubin: 415 umol/L. Direct Antigen Test (Coombs): 3+ The mother of the infant is reluctant to bring the baby to hospital. You must call her and explain why the baby needs to be seen, what further investigation and treatment is likely to be needed and what the consequences of non-treatment might be."

my understanding: baby needs to be seen since there is evidence of hemolysis secondary to isoimmunization (coombs positive), further investigations would this include testing to see if this is ABO incompatibility or Rhesus disease? and treatment exchange transfusion? then the consequences of non treatment would be kernicterus which I could explain as being damage to the brain that is irreversible?

 

[Rumor13]

For explaining to a non-medical person or the mother: say there is evidence in the tests that the mother's immune system was destroying the baby's red blood cells in the womb. This is potentially serious because if too many were destroyed it can lead to permanent brain and organ damage or even death. The baby needs to be taken to a hospital for more testing and monitoring to make sure its body is getting enough oxygen and to conclusively identify and confirm the cause of the abnormal lab results.

 

[sunealoneal]

You'll also want to assure the mother that she is not to blame.

 

[ZX10R]

When in doubt KISS. First you want to tell her; her baby isn't getting enough air to her tissues and has very low oxygen levels. If the baby doesn't come in for testing there could be serious developmental issues. As you can see your baby has very yellow eyes and skin. This is a very important sign that something is going on.

If you told a lay person that, hey at trimester 3 you started producing IgG4 Abs against you're babies RBC's and now the baby's spleens' macrophages are using FcgR causing ADCC. They don't understand that. Most people don't even understand HEME is in RBCs, they just think air goes to heme then to tissue. I don't blame them either is a very complex and not something I would expect a non-science oriented person to really care about.

As for other testing; the direct coombs test doesn't give you all the answers you need. Since Coombs direct tests for IgG, IgM, and complement it's not very good at specificity. First you would want to look at Baby's blood type and mother's blood type, if baby is Rh- that rules that out or mother is Rh+ that rules that out. Before you go to genetic counseling you would want to check complement serum levels, or possible stenosis, maybe the liver defect. That wouldn't explain the 3+ direct coombs test though. So the two options that make the most sense is mother's Abs, but IgG has a half-life of 27 days so they will eventually run out. IgA from mother will just go to mucosal tissue and not effect RBCs, nor can it activate complement. The baby could have a defect in CD59, CR1, ect. Baby Abs wont be created till 2-3 months (hence around when vaccinations begin) so it wont be Baby Abs. That rules out adaptive autoimmunity.

Trick questions its paroxysmal nocturnal hemoglobinuria. Check recticulocyte levels.

 

[animando]

"Tests have shown that your baby has a high level of bilirubin, a waste product of blood cells, which is why the skin is yellow. Now it is beyond the normal limit and it may be toxic to the brain if we don't control it. It is important that you come with our baby at the hospital so we can figure out why it is happening and begin a treatment."
I wouldn't mention terms like kernicterus, Coombs, ABO/Rh over the phone (supercalifragilisticexpialidocious).
The point is to bring the mother to the hospital, not obtaining informed consent for every diagnostic and therapeutic steps.

First you want to tell her; her baby isn't getting enough air to her tissues and has very low oxygen levels.

How do you know? Baby is feeding well.

 

[luysion]

Hey I agree man, not sure why they wanted me to talk about investigations and treatment on the phone... the results suggest some sort of isoimmunization right. like rhesus or ABO incompat, so would you just do tests for that + as mentioned above hemolytic anaemia tests (FBC, look at RBC count, haptoglobin etc)
Should a test also be done to work out which form of bilirubin is elevated ? conjugated or unconjugated? or does the positive coombs suggest its prehepatic? so things like US checking for biliary atresia is not necessary

 

[mvenus929]

To answer the first question, you explain that the yellowing of the skin and eyes is caused by breakdown of the cells needed to carry oxygen throughout the body. In extreme causes, the jaundice (most moms are familiar with this term, but you can explain it is what we call the yellowing) could cause damage to the brain. As such, we need to run some more tests to see how high the level is and how best to treat it. If she asks more questions, you can go into more detail about how there are these particles that are in her blood that moved over to the baby in the last few weeks in the womb, and that those are responsible for breaking down the red cells. No, this problem will not last forever, because once the particle is used up, it doesn't cause any more damage, and there's only so many particles that got transferred over. Eventually, the baby will begin to make her own blood and the problem will go away.

Hey I agree man, not sure why they wanted me to talk about investigations and treatment on the phone... the results suggest some sort of isoimmunization right. like rhesus or ABO incompat, so would you just do tests for that + as mentioned above hemolytic anaemia tests (FBC, look at RBC count, haptoglobin etc)
Should a test also be done to work out which form of bilirubin is elevated ? conjugated or unconjugated? or does the positive coombs suggest its prehepatic? so things like US checking for biliary atresia is not necessary

A smart pediatrician will always order both total and direct bilirubin levels on a newborn. This would need to be ordered regardless when the baby came to the hospital, because you'd need to know if phototherapy is sufficient therapy, or whether we have to go down the IVIG and exchange transfusion route. You also monitor both as a response to therapy. In terms of explaining this to mom, you say that most of the time, we can use lights to help break down the bilirubin level that causes the jaundice, and we monitor the blood levels. This usually means staying in the hospital for a couple days, and mom can continue to breastfeed during this time. In severe cases, we may need to put in an IV and give the baby some blood, but we won't know whether or not we need to do that until the baby comes to the hospital.

The positive coombs suggests that there may be a problem with jaundice in the newborn, but it does not always happen. If the baby is coming back to the same hospital of birth, generally we'd get a bilirubin level and a CBC and that's it (though we'd probably get a type and screen just in case). If it's a new hospital, a newborn ABO and DAT screen would be repeated. You would not order an ultrasound until you saw that the direct bilirubin level was elevated and started the workup for that.

 

[luysion]

Ah cool.
So just making sure- would you need to tell the mother we'll need to take some of her blood aswell (to check for Rhesus disease and ABO incompatibility) to confirm our suspicions of babies blood reacting to your particles?

 

[calvnandhobbs68]

When in doubt KISS. First you want to tell her; her baby isn't getting enough air to her tissues and has very low oxygen levels. If the baby doesn't come in for testing there could be serious developmental issues. As you can see your baby has very yellow eyes and skin. This is a very important sign that something is going on.

If you told a lay person that, hey at trimester 3 you started producing IgG4 Abs against you're babies RBC's and now the baby's spleens' macrophages are using FcgR causing ADCC. They don't understand that. Most people don't even understand HEME is in RBCs, they just think air goes to heme then to tissue. I don't blame them either is a very complex and not something I would expect a non-science oriented person to really care about.

As for other testing; the direct coombs test doesn't give you all the answers you need. Since Coombs direct tests for IgG, IgM, and complement it's not very good at specificity. First you would want to look at Baby's blood type and mother's blood type, if baby is Rh- that rules that out or mother is Rh+ that rules that out. Before you go to genetic counseling you would want to check complement serum levels, or possible stenosis, maybe the liver defect. That wouldn't explain the 3+ direct coombs test though. So the two options that make the most sense is mother's Abs, but IgG has a half-life of 27 days so they will eventually run out. IgA from mother will just go to mucosal tissue and not effect RBCs, nor can it activate complement. The baby could have a defect in CD59, CR1, ect. Baby Abs wont be created till 2-3 months (hence around when vaccinations begin) so it wont be Baby Abs. That rules out adaptive autoimmunity.

Trick questions its paroxysmal nocturnal hemoglobinuria. Check recticulocyte levels.

The first part of this isn't correct. The baby would have to have extremely severe anemia for anyone to even consider a problem with tissue oxygenation. The brain damage from severe hyperbilirubinemia isn't from lack of oxygenation. So no, do not say this as you might get points off for not explaining the situation correctly.

 

[luysion]

How does this sound?
Lets say the mother is Mrs Jones and the baby george

"Hi, Mrs Jones? This is Dr X, calling about georges investigation results from when you came into the GP a few days ago. The results suggest that George is yellow because of his blood reacting with your blood leading to particles in his blood being destroyed. Now I know this may be odd to hear, considering George appears well and is feeding well, but this condition can be deceptive and does require urgent treatment. I would like you to come in with George to the hospital so we can carry out further investigations (basically more blood tests) to make sure we have the correct diagnosis so we can proceed with the appropriate treatment. It is important you bring George to the hospital straight away, as no treatment may lead to the possibility of George undergoing irreversible brain damage. The good news however is this is avoidable as long as we start treatment straight away. "

Since its a role play the mother obv objects and says she doesnt want to bring in the kid since he appears fine - for this is it ok to say that the condition is deceptive? or would that scare the mother into thinking things are significantly worse than they are ?

 

[mvenus929]

How does this sound?
Lets say the mother is Mrs Jones and the baby george

"Hi, Mrs Jones? This is Dr X, calling about georges investigation results from when you came into the GP a few days ago. The results suggest that George is yellow because of his blood reacting with your blood leading to particles in his blood being destroyed.

Since its a role play the mother obv objects and says she doesnt want to bring in the kid since he appears fine - for this is it ok to say that the condition is deceptive? or would that scare the mother into thinking things are significantly worse than they are ?

1. It's particles in her blood (antibodies) destroying his blood. Her blood doesn't cause any reaction in him, it's his blood in her that results in the antibodies being formed.

2. If I did the conversion right, the infant has a bilirubin level of 24 at 4 days of life. It is significantly worse than he seems. The top curve maxes out at 21 at 5 days.

Ah cool.
So just making sure- would you need to tell the mother we'll need to take some of her blood aswell (to check for Rhesus disease and ABO incompatibility) to confirm our suspicions of babies blood reacting to your particles?

This is what prenatal records are for 🙂 We are not treating the mom (unless you are a GP that didn't give Rhogam, then for shame), but the baby may need a transfusion, so it is reasonable to repeat the ABO and DAT. I've also seen a newborn transferred from another hospital who had a different ABO in the system than we got when we tested the baby. Moms also typically know their blood type, since they have to get tested during pregnancy, so it'd be easy enough to ask.

 

[scoKraz4]

Just reminded me, we got back labs on a mother last week and she had Sinai-Baltimore variant Hemoglobin. Anyone ever hear of that?

 

[masaraksh]

Is 'cooties' an appropriate term for non-medical people when describing this kind of pathology?

 

[Quizlet04]

Hello mom-person. We did a blood test that showed your son Larry has a problem with his blood. This sometimes happens when the baby and mom have different blood types. In some cases, parts of the mom's immune system attack his blood cells, killing them. The dead blood cells are broken down by his liver into something we call bilirubin, which has a yellow color. A little bit of bilirubin isn't harmful. However, your son has lots of it, which is why he is turning yellow. Too much bilirubin can hurt his brain and cause brain damage. If you come to the hospital, we can figure out what is causing his bilirubin and make sure he stays healthy.

That should be at a 5th grade level.

 

[TBV]

Yo baby be sick. Come back before he explodes.

 

[hmockingbird]

Hello mom-person. We did a blood test that showed your son Larry has a problem with his blood. This sometimes happens when the baby and mom have different blood types. In some cases, parts of the mom's immune system attack his blood cells, killing them. The dead blood cells are broken down by his liver into something we call bilirubin, which has a yellow color. A little bit of bilirubin isn't harmful. However, your son has lots of it, which is why he is turning yellow. Too much bilirubin can hurt his brain and cause brain damage. If you come to the hospital, we can figure out what is causing his bilirubin and make sure he stays healthy.

That should be at a 5th grade level.

This sounds good. Keep it very simple and avoid big words. E.g. (from the OP's script), instead of "investigations" use "tests", "deceptive" is also too big, etc. (could say, yes he seems normal but the blood tests show he has too much bilirubin)

Even if a parent is well-educated, it's best to keep it VERY simple at first, because they may not be absorbing as much information as you would think due to shock/worry.

 

[luysion]

Is it ok for me to say bilirubin and jaundice ?
Is saying "break down products" too little. Also is it fully necessary for me to tell the mother that her blood is responsible? is this for legal purposes?

"the results suggest baby has a condition which can happen when the mothers blood and the babies blood have a mismatch in some characteristics, leading to particles in the babies blood (her red blood cells) being destroyed, resulting in accumulation of a breakdown product which we call bilirubin that causes the yellowing you see in george"

is that alright?

 

[syma]

Is it ok for me to say bilirubin and jaundice ?
Is saying "break down products" too little. Also is it fully necessary for me to tell the mother that her blood is responsible? is this for legal purposes?

"the results suggest baby has a condition which can happen when the mothers blood and the babies blood have a mismatch in some characteristics, leading to particles in the babies blood (her red blood cells) being destroyed, resulting in accumulation of a breakdown product which we call bilirubin that causes the yellowing you see in george"

is that alright?

Easy way to check if it's ok to use certain words is to check their understanding. They said "non medical" person, but that doesn't mean they have zero understanding of certain things.

 

[Tenk]

Trying to explain this stuff over the phone is a recipe for disaster. You say and then DOCUMENT: ma'am your child's blood is being attacked and destroyed by antibodies. If you don't come to hospital your baby may develop permanent brain damage or die.

That's all you say. Then you wait. On OSCEs and in real life they will then ask a question: well can it wait? No. Is this serious? Very. Your child can die.

It's the same thing as the newborn with a fever. There is no other option except get the baby to the hospital. Arrange transport yourself or call 911 if you have to.

 

[luysion]

Yeah ive never had to do these phone consults in real life so i was unaware of how much you say on the phone.
interesting!

also based on those bilirubin levels - the baby needs exchange therapy, so its actually quite a serious case of rhesus disease? also surprised how the mother wasnt screened..

 

[mvenus929]

Yeah ive never had to do these phone consults in real life so i was unaware of how much you say on the phone.
interesting!

also based on those bilirubin levels - the baby needs exchange therapy, so its actually quite a serious case of rhesus disease? also surprised how the mother wasnt screened..

I've never seen a baby receive an exchange transfusion, and I've seen some really high bilirubin levels (up to 27, I think). You have four hours once the baby is admitted to bring the bilirubin levels down. This is accomplished with IVIG and super intensive phototherapy (like 5 lights, or as many as you can find on the unit to place on the baby's exposed skin). There cannot be any removal from the lights during this time, so usually they will get IV fluids. If the level has improved and has dropped below exchange levels, there is no need for exchange transfusion.

And the babies that I've seen with super high bilirubin levels have been ABO incompatible, not Rhesus incompatible. The babies that need transfusions in utero (PUBS procedure) generally are the second or third baby born to a Rhesus negative mom who didn't receive Rhogam. Those babies generally get put on phototherapy early, but generally don't need exchange transfusion either. May need a transfusion, but not an exchange transfusion.