Help! Jaundice and brain damage!

[lokka]

Please somebody put my mind at rest. My ds is now 10 weeks old.He had jaundice when he was born on skin and in eyes, I noticed it but was told it was slight not to worry and if it was still there in 2 weeks go to the hospital for tests. I continued to see Doctor who told me it was OK but at 3-4 weeks when he still wasn't better..and I think even more yellow, I took him to hospital. They did blood tests and his billirubin levels were 12.9, they said it was breast milk jaundice and not to worry. At this point I saw my doctor again who said that he was a little floppy, I started to panic after reading things on the net. Ds was passing most of the day sleeping and eating(by the way, he eats really well and is now 6 and a half kilos). His Jaundice is finally going..he still has slight yellow in the eyes and a tinge to the skin but the levels are now 5.2. He is also starting to pass more time awake and this makes me feel much better. My worries are that when he was born no blood tests were done and maybe his bilirubin levels were high and have some way damaged his brain. I'm looking at him constantly for signs and not enjoying him to the full extent. I think his muscle tone is a bit better, but how do I know? He is smiling, starting to bat at objects but not reaching out yet. He still sleeps quite a lot but is increasing his awake time.I am trying to enjoy him as much as poss but sometime the worry creeps back. Anyone have a similar experience?

All 3 of mine have had BF extended jaundice, my youngest had it for nearly 4 mths, his levels were very high in hospital (just under transfusion level), we were in for 2 1/2 weeks. At 14 days they stopped doing the phototherapy cos it was pointless at that stage, and we went home, kept him in the light as much as possible and bf frequently to keep his fluid intake up. I was worried about the effect on his brain as they effectivley stopped treating him, but they did put us on recall to the hospital. It was really strange, because it literally cleared overnight...one morning quite yellow, next normal! And he is absolutely fine with his development. I would go and speak to your HV or Doctor and ask for a referral to the hospital to set your mind at rest. THey recalled my ds ever 3 mths til he was a year old, it kept me happy and sane. Try this link for more info, the section on Breast milk jaundice is reassuring here

Thanks, Have been reffered to hospital and the docs there haven't said much apart from the levels now are dropping and he seems fine. The difference in our cases is that they were measuring your sons levels in the hospital whereas I have no idea what his levels were at the start. Were your babes really sleepy too?

Maybe get his muscle tone looked at?

Yes all 3 of mine were sleepy to start with, but they are fine. I had to wake them every couple of hours to feed! Although as they got older they did tend to wake more on their own. My two youngest were slow to sit and they walked a bit later than the eldest at 15mths, but seem fine. Pretty sure my DD has hypermobility (runs in the family) so I havent connected it to the jaundice really.

They've said he's holding his head up well. Don't know about the rest. Will check muscle tone with Paed next visit.

Sounds like he is doing fine for 10 weeks, I am sure the hospital will reassure you!

I hope so, the problem is you (or the doctors) never know until they start reaching their milestones, or thats the way I see it anyway.

Mankyscotslass- you said your youngest had very high levels in hospital.Did they know this only from the blood test or was he really yellow? Am just wondering if ds had high levels but we didn't know.

Ds was very yellow, orange in fact,withing 3 days of being born. We were still in as he was a little bit early and I had had a csection. To this day he is more sallow skinned than the other two, although not jaundiced any longer! They actually stopped doing blood tests at day 14 as they said the period where the bilurubin could do damage was past. TBH, all the phototherapy did was bring it down a bit , then he was out from under and within 24 hours his levels would shoot back up anyway. I can remember googling for info frantically, then being hysterical with worry, but he really is fine.

lokka

They standardly test billirubin level at birth in the US. Did they put your DS under a special light? That is what they do here when levels are high.

mine had jaundice for weeks and weeks - so long, I can't even remember how long he had it for (certainly 6 weeks, I think possibly even longer)

I didn't even know this about jaundice and brain damage. They can tell a bit by looking - you'll know what severe jaundice looks like. They go really very very yellow - I'm sure if it had been severe, they would have done more.

Perhaps share your worries with your paed.

And I agree with FS, they are really on top of it, if worried at all.

I live in Spain and they don't routinely check billirubin at birth here and discharge you after 48 hours and then you don't see MW until 7 days later (no house visits) HV's don't exist. When I saw MW 7 days later she said he was jaundiced but not severely, so I'm going on that really. My partrner is Spanish so I put the orangey colour down to him as he's really dark. I suppose I just have to trust the fact that they know by looking.

I am white, dh is white, and we live in a very white middle class area. When ds2 was 8 days old we were sent back to the hospital because the midwife (also white) was worried that ds was jaundiced. He also wasn't pooing. The doctor referred us up to the paediatrics ward. We were getting very worried. The paediatric consultant - Asian - checked him over and said "He's not jaundiced, he's got dark skin". And he was right! Ds does have swarthy skin and tans instantly. (The pooing and feeding were a different issue, resolved separately.)

People who aren't used to dark skins may be more suspicious of any skin tone that isn't what they expect. Also, we have much less natural sunlight in UK than in Spain, so I wouldn't be surprised if monitoring and treatment protocols are different in Spain.

Yes..the skin has been a big debate between everyone in family. I think it was a little yellow DH thinks it is his skin (his skin is more brown , not yellow!)But, DS's eyes are yellow. In both corners not all the way to the iris.So that's a sure sign!

Well, DS is definetley the darkest out the 3 kids, but even then he was definetley orange/yellow when at its worst...and all his eyes were yellow, he looked awful!

So, the whole white part of the eyes was yellow?

Lokka, yes it was all over thw whites of his eyes, although it was worse in the corners. Poor wee thing looked awful!

Thanks everyone for your replies, If anyone else has any other advice or experiences would love to hear!

my ds1's bilrubin levels were over 400
he is a bright, noisy 5 year old.
PLease try not to worry

but just to add - talk to your gp if you are at all worried

DD was born polycytemic (sp?) which meant her blood was too thick. I notice in the recent episode of House the patient had this. Anyway one of the side effect's is severe jaundice. Her blood was diluted and she was given transfusion. SHe was at risk of Brain damage. She was in ICU for a week.

I was BFing but they need to flush out their system so I had to express and any shortfall was topped up with formula. They had a specific fluid volume in mind. It is incredibly important that they get plenty of fluids. After a poo her colour would alter. It was strange.

She was put under turbo lights and had a bikini type nappy (I kid you not) so that most of her body was getting the lights. Eventually her levels came down and I took her home and she was still yellow for a few weeks. No sign of brain damage of any sort.

DS was also very jaundiced but not as bad as DD. We had to have him tested at the GP a couple of times.

My advice is feed as much as possible, plenty of sun and try and not to worry.

looks like we are using a different scale - my 'over 400' was not in mg/dl which I think yours is.

The comparison then for my ds1 is about 23-24 compared to your 12.9....

i think you are worrying yourself too much he is still so young my son had slight jaundice and i was told to put his moses basket in front of window so the sunlight could get him no t to long if to much heat coming through but uv rays in sun can clear the jaundice and it did work just see how he is over next few weeks as all children learn at different rates and i'm sure if there were any real problems you would of definatly spotted them by now just see if he follows toy when moving it front of him my son slept alot untill he was about 3 mths then he became more aware of things

drosophila - ds1 had the 'thong' nappy too and like 'shades'. He need triple phototherapy and was in special care for a week. He narrowly escaped a transfusion. One consultant was about to give him one and his senior said to try one dose of phenobarbitol (?) as this can kick start the liver before calling in a specialist from another hospital. Thanksfully it worked. He was 3 weeks old before he left hospital!

SOrry - hijack over