Experiences of jaundice and phototherapy?

[MrsButterfly]

My poor little man is 3 days old and has been admitted for phototherapy as his billirubin levels were too high and therefore has jaundice. It's breaking my heart to see him being treated as although it's not painful he isn't good at settling himself and having his eyes covered just looks awful for him. But I want him to get better so will deal with it.

Does anyone have any experience with their lo's having the same treatment? If so, how long were you in hospital for and how did your baby cope with the treatment.

I'm bf exclusively and am concerned I may not be producing enough milk which has caused him to be dehydrated and worsen the problem. Really don't want to have to introduce formula if I don't have to but doctor has suggested it and I don't want to make him worse and go against their advice.

I'm so upset - this is not how I pictured my first week bonding with my beautiful boy.

 

[summer rain]

I know its horrible, but please try to relax. Jaundice is a completely normal physical process and 70% of full term babies will be jaundiced to some extent; and quite a substantial number do need phototherapy. Jaundice requiring phototherapy runs in both mine and my husband's family; so all our boys got heavily jaundiced and they had prolonged jaundice as well. Some doctors do erroneously believe that formula flushes out jaundice or its due to not getting enough fluids; but this is rarely the case. In fact my two boys where the hospital insisted on them having formula were jaundiced for an extremely prolonged period; 16 weeks (yes 16) and 7 weeks respectively. Both times the hospital admitted that formula was not the best option in their case. Also my husband's two youngest brothers were EFF and feeding very well; yet they required intense phototherapy from 3 days old. Donor milk is available in some hospitals for jaundice; ask if it is an option in yours. If not then ask for another opinion with regard to giving formula; occasionally formula top ups are needed with jaundice as they are with a number of other medical conditions; its not the end of the world but do bear in mind some doctors do push them without there being a need. I found at my hospital some doctors pushed formula top-ups and others said they should absolutely not be given as they have no proven benefit and in some cases can clog the baby's digestive system more than breastmilk would, meaning that the bilirubin isn't flushed out as quickly. xx

 

[summer rain]

You could also ask if you can express milk, either your milk should be in already or starting to come in and if you could feed your baby directly and give the expressed milk this should be fine to flush out the jaundice. Do bear in mind though that there are some types of neonatal jaundice that are not linked to fluid intake and instead are due to (in most cases harmless) hereditary reasons, blood group incompatibility etc xx

ETA: and feel free to PM me as two of my boys needed phototherapy; the youngest a more 'mild' version the eldest quadruple phototherapy and IV drip and antibiotics for 90 hours

 

[Pinky00]

My LO had jaundice which the MW at the hospital noticed shortly after his birth. I had a c section so had to stay a minimum of 2 days anyway but with the jaundice treatment they didn't discharge us until he was 5 days old.

In the end I was desperate to get home, he was just below the range for which they treat with phototherapy but they made the decision to treat him anyway! He had to spend hours on the bili bed with those awful goggles on, thankfully he quite liked it and hardly cried!

The worst part was that it ruined my start with bf, I was doing ok but they got me to pump whilst he was being treated, that didn't work as my milk hadn't come in so I was only getting a tiny amount! In the end they persuaded me to supplement with formula and that was the beginning of the end with bf as he wasn't interested after that!

Tbh I would have done anything to get out of hospital, I just wanted us to be home with Dh!

 

[MrsButterfly]

Thanks so much. They've ruled out it being linked to blood group.

The nurses on the ward have been great and encouraged me to just keep bf but more regularly and if there's no improvement to try expressing - so much like you have said. I know in the grand scheme of things it's very standard and common. There is just something totally awful about seeing your little one so vulnerable and not being able to explain to them why you can't make it better.

Really appreciate your advice and reassurance

 

[summer rain]

I'd honestly keep offering BF every 2-3 hours and maybe consider expressing to top this off if there isn't an improvement; but the light therapy usually helps make quite dramatic results particularly if there is no underlying cause such as blood group issues so hopefully your LO will be back home with you soon. My two LOs who had phototherapy were readmitted after 7 days with high bilirubin levels after being discharged as fine after they were born, and in some ways that was harder than had they just still been in after being born; especially as they were put in SCBU and there was nowhere for me to stay there. If you do have to give bottles whether of EBM or formula it doesn't have to be the end of the world, my youngest whom they insisted on giving 1 bottle of formula to test it out and also because they wouldn't let me stay in nor was there enough time to express enough milk at that time of night; has never had formula since and is still BF at over 18 months old. He never experienced nipple confusion because while the hospital insisted on bottles as opposed to cup feeding as per policy; they had some special premature teats that could be used like a dropper, they had a very slow flow and didn't really involve sucking on the teat as they were designed for babies with a poor sucking reflex. xx

 

[kirst76]

my first DD had jaundice and was kept under lights in the SCBU for 2 nights, she was in the incubator from the first moment so was getting really dehydrated and not urinating and my milk didnt come in so they were supp feeding her with formula. I decided after a hell of a time trying to BF that she was better off on formula.
Most babies will only need about 24 hours under lights.
Hope you little guy is alright xx

 

[youngmummy94]

I had the same experience with LO, he was under the lights for 3-4 days. It seems like the longest few days but it'll pass and you'll forget you were ever there. Try not to stress

 

[Librastar2828]

My lo was jaundice and the pediatritcian spotted it when doing her rounds the day he was born. We had to stay that night with him under the lights all night and part the next morning. It was awful I couldn't pick him up. Didn't like feeding him as it meant taking him out the lights which were making him better. The eye mask was terrible massive kept slipping and his eyes then were exposed.

We were home the day after his birth which was the day the lights were removed and when the midwife visited us at home the following day she said he still had it so bad o hosputal we went and at two days old we weeee admitted with him having an infection so I'd keep him under the lights as long as poss. My lo obviously not enough at first.

He wasn't in taking much milk (ff) and others have said fluids flush this out so maybe this wasn't helping my lo so offer as much as poss in whatever way you can so your lo doesn't take a pro longed recovery like mine.

Remember it's extremely common in newborns a high percent have it

 

[XJessicaX]

Exactly the same as you! Levels were slightly high, I BF, and we were in hospital for one night with 12 hours of UV light therapy but at the end of the 12 hours the midwife who came on in the morning was extremely cross with one of the night nurses saying that my LO only required 6 hours of the light therapy.

We also had an NG tube put down LO's nose was traumatising and I had to leave the room. She responded well to the light BUT....whatever you do MAKE SURE THE EYE GOGGLES STAY ON!!!! We had to tape them on when the nurse left the room. It can seriously damage the babies eyes if any of the light goes in for a period of time.

And stick with breast feeding. Tell your doctor that its pathetic of him to tell a distressed mother to introduce formula at this time. My doctors and nurses were luckily incredibly pushy with BF! Never met so much pro-breastfeeding nazi's in one room!!! Thank god I said "yes I breast feed" or I think I may have been shouted at!!

 

[dizz]

I think Erin was under the lights for 2 days in NICU, then another couple of days in the ward as they wanted to get her a decent bit below the treatment line before taking the lights off - to start with they had a cover on the cot (by this point after the incubator I was beginning to believe I'd actually given birth to a chuffing plastic box wiht baby in the middle), but that was really really distressing her - she found the whole being naked thing untolerable, pulled her goggles off constantly and cried so much one particularly delightfully insensitive cow complained that "that light's blaring all night and the baby's disturbing everyone" (and then proceeded to spam the refresh button to see if her latest billi test results had appeared on the system and they could turn the lights off)... so in the end we had her in scratch mitts, a hat on her head pulled down to keep her goggles on, and the lid off the cot which worked a bit better - and just kept an eye on her temperature.

Then had a few more blips where her levels kept rising but staying just below the line where they'd treat her again - which I was terrified about - and she was on 12 hourly blood tests for a good couple of days (during which time she slapped doctors approaching her with sharp stabbity things - good on her!)... poor girl had no heels left by the end of it all!

Was allowed home with her still slightly jaundiced - which would have been great being monitored by the midwife and health visitor - apart from the time when they sent one who'd never seen her before so had no idea of how much it had reduced down - who went into full-blown total stress out "this child may need to go back to be rehospitalised after the weekend" mode and nearly drove me to a nervous breakdown (I have quite severe PTSD from the crap the hospital put me through - that place is the place of nightmares).

She's fine now - it cleared up completely within about a week of discharge. She was largely being fed expressed breast milk throughout (she couldn't latch and was NG tube fed at this point) topped up with formula - but she was a preemie to factor into the equation - and they like their numbers and measurements with preemies lol.

Oh and to the NHS staff - complaining about phototherapy lights "blaring all night" is insensitive... as is referring to a jaundiced child as "tango baby." (You seriously couldn't make this stuff up)

 

[nemo1]

It was so traumatic for me too!! The morning we were going to be released, a midwife just casually said "hmm he's looking a bit yellow don't you think" and took him near the window. I just cried and cried as I really wanted to go home. Anyway we were then moved to a private room and they took bloods (I will not forget that little cry he gave when they did that!). Anyway he has under the light for 12 hours and that was the worst night of my life. He lay in there naked, the room was FREEZING, he was shivering constantly and those horrible eye masks...he kept pulling them off. I stayed up all night making sure his eyes were protected and I just cried and cried all night and the MW thought I was suffering from PND or something! It was horrid, esp since he was a tiny baby and seeing him naked and shivering really really made me feel bad. But all good now!

You'll be home in no time!

 

[MrsButterfly]

Thanks for sharing all of your experiences - its been really comforting during what has been such a hideous 24 hrs.

Last night was horrendous - he could not settle himself in the cot as he hates being naked and alone anyway. I cried most of the night as I felt so helpless and that he must have felt abandoned. But he fed well through the night and produced lots of wet and dirty nappies. So I was devastated when his first bloods came back that the levels of bili have risen. So he's still under the lights now - they added an extra one and it's making him hot and lethargic so I'm worried will make the dehydration worse.

Still bf exclusively. A tube was mentioned this morning for feeding - I burst into tears and have refused at this point. Not sure if it's my selfish need but feel having no contact with him at all will distress him further. Waiting on second blood results now - praying for good news xx

 

[ilysilly]

My LO had to have this done as well. TRY to get some rest even though I know it's hard. Are you able to have your LO brought to you, or do you not have a room? LO's jaundice is not your fault and they'll get better soon, promise! My LO's eyes are still somewhat yellow, but the rest of her is better. It just takes time.

I hope you get your good results soon!

 

[MrsButterfly]

My LO had to have this done as well. TRY to get some rest even though I know it's hard. Are you able to have your LO brought to you, or do you not have a room? LO's jaundice is not your fault and they'll get better soon, promise! My LO's eyes are still somewhat yellow, but the rest of her is better. It just takes time.

I hope you get your good results soon!

Thanks so much. Fortunately I'm sharing a room with little one which does make it slightly easier. And totally agree, I def need to rest to help me and him. Trying to be a bit stronger about it all today - was all just a shock yesterday - had never contemplated we'd be back in hospital so soon!

 

[gingersrule]

Ive had 2 that needed phototherapy for about 5/6 days, and i breastfed them. During the day try to have lo near a window as the natural light will help.. Hope all goes well

 

[dizz]

We found that making almost a little "nest" helped her feel less exposed and naked and unhappy about the whole thing - we had rolled up blankets placed in a U shape around her bottom half, not coming up to anywhere near face level obviously - but it made her feel just a little bit more secure... and added about another 2 miliseconds on between goggle and nose tube pulling attempts.

Even if his bili levels have risen - which Erin's did and I panicked about (and bawled my eyes out over - I did lots of this!) - one of the doctors showed me the bili chart - and the curve with the lines where they'll treat them under the lights ALSO rises, so even though her numbers went up, she actually pulled further away from the line which had gone up even further if you get what I mean?

 

[summer rain]

Both my boys who needed phototherapy their levels spiked back up again, again it was said to be a genetic thing as they didn't respond to the phototherapy or extra fluids as is usual. As dizz said their level is expected to rise in the first few days anyway, so this is why in many areas unless a baby is clearly unwell; they do not even test for bilirubin levels before 7-10 days of age. When they got out of hospital they both went very yellow again despite feeding well and gaining ample amounts of weight, my eldest was even having formula on a pretty much daily basis (more because I mistakenly thought it would give me a break as opposed to any medical reason), didn't make any difference to his bilirubin levels at all. They were both extremely yellow, even their eyes until all of a sudden over 2-3 days their jaundice cleared, for my eldest this was at 16 weeks the youngest 7 weeks. I was told with my youngest by the A&E paediatricians that they'd expect a 7 day old to have levels like this and the midwife shouldn't have told us to come in because he was clearly not lethargic or ill, but as we had come in, they were now obliged to admit him. The midwife also lied to me and said i'd be able to stay in with my son; when I was not and the SCBU said its rare for them to allow parents to stay in, even BFing ones. It was only the second night he was in that I was allowed to stay in a room with him and this was only at the discretion of one of the nurses . On the plus side the SCBU is one of the best in London and has state of the art incubators when they are doing the light therapy that are controlled at a warm temperature; so no shivering naked babies there xx

 

[baskinps]

I had this happen as well, which ruined my home birth just a little bit! It was very stressful and I cried quite a bit, much of it having to do with hormones lol. It's really not that bad if you are at a good hospital. However, it did significantly impact my milk supply which caused me to deal with top ups for a few months after. I told my midwife that I should have been pumping the whole time in hospital as that's when my milk came in. Since we are passed it, I will suggest it to you : PUMP! Good luck and don't get too down about it.

Edited to add that he was in there for 3 nights and a few weeks of follow ups (this was the worst as they started picking at his weight when he was totally fine, just wanted him out asap) but they let me room in with him (on a couch! no cot even).

 

[lozzy21]

Niamh spent 5 days under the lights and 4 days needingiv fluids. If your LO is feeding well then i would refuse all top ups.

To help with LO feeling exposed get a sheet and twist it round and then loop it round her body, it helps them feel more secure. If shes still unsettled put a hand on her head and another on her tummy and shhh/talk/sing to her.