Jaundice: My Hospital Experience - Page 2

[APToddlerMama]

I just wanted to say that while I completely respect everyone else's experiences, we had a very different experience with jaundice. Our hospital did many many things which I am still irritated by, so I don't want to minimize that, but also wanted to say that there is a point when jaundice does become actually *dangerous.* My son was preterm, but we were sent home on time with him. He had higher but still "okay" bili levels. We went home and his whole "suck, swallow, breathe" pattern with nursing wasn't so great, so I was having to pump after he nursed and then give him a bottle. When we returned to the hospital less than 24 hours after being discharged, he was GLOWING yellow, they checked his bili levels and they had skyrocketed to a really dangerous level. I cannot recall now what it was, but I remember reading on the internet that he was at risk of a cognitive disability with this high of levels. I was soooo mad that the hospital had sent us home in the first place. He had to be admitted to the NICU. This of course after they performed all sorts of unnecessary procedures like breaking my water without my permission and giving me an episiotomy again with consent. Anyhow, currently my son has about a 60% delay in speech and language, and has also been in physical therapy for gross motor delays. I doubt the jaundice had anything to do with it, but it is always a "what-if" in my mind. I just wanted to give another side of this so that anyone reading this can do their own research when the time comes and make an informed decision rather than just thinking that a baby *never* may need treatment for jaundice. Being under the bili lights and giving my son some formula did not jeopordize our nursing relationship at all. One of my friends who has four kids and is a NICU nurse had a lactation consultant ream her out for supplementing with formula with her fourth baby so that he didn't have to be under the bili lights. She overheard the LC say to the doctor in the hallway that she was "ruining" the nursing relationship and wasn't ever going to be able to breastfeed longterm. Her doctor commented back that this was her fourth baby and she had done this with each one of them and they had breastfed each for two years without issue. I tried my best to stay away from formula but in the end, a small amount was okay for my son and was for her four kids as well. Sometimes it just depends on how severe the jaundice is, and if it really is bad, a little formula and the bili lights *might* be the lesser of two evils.

[crunchy_mommy]

Originally Posted by APToddlerMama

I just wanted to say that while I completely respect everyone else's experiences, we had a very different experience with jaundice.(...)Sometimes it just depends on how severe the jaundice is, and if it really is bad, a little formula and the bili lights *might* be the lesser of two evils.

Wow I'm so sorry to hear about your experience, that sounds horrible I think this right here shows the problem with hospitals pushing formula on jaundice babies (and other conditions that may or may not need it) because how will we know when the situation is "serious" and when it's just bad hospital policies? It would be quite clear & obvious if they only recommended treatment in situations such as yours. I don't think most of us would argue that your baby's situation was extreme & needed intervention. I don't understand the disconnect in hospitals... on the one hand we have babies like yours being discharged when they should stay, and on the other we have doctors pushing formula, bili lights, sugar water, etc. for less severe or even "normal" newborn issues!! Makes no sense & I don't know how we're supposed to figure out when to trust them & when they're overreacting or basing their treatment on outdated practices...

[Umpqua]

CrunchyMommy, I agree and APToddlerMama, what a horrible time you went through. I'm so sorry. I can't stand the fact that I had to rely on my own research to make the call for my DS when it came down to it. Had the hospital been more reliable and trustworthy during the previous few days of my stay, I may have trusted their judgment. But they proved themselves to be formula-pushing proponents of all sorts of interventions I won't even get into here (vaxes, circ, I felt like I was fighting a battle on every single thing that seemed natural to me).

Thank goodness my DH and I came armed with the research in our heads, as well as a stack of books. At one point an aide asked me if I was a "student" because of the stack of books by my bedside. I was so grateful to have that info at arms' length during my stay based on the challenges I faced.

It's unfortunate that some hospitals can't relate to these situations on an individual basis and instead just prescribe the common fix, no matter the circumstance.

[babygirlsmama]

Wow, thanks for sharing. Btw, this sort of experience is exactly why I chose homebirth...not as much for the birth experience but for the post-partum phase! I think it must be very difficult to stand up for yourself in the face of the hospital pressures to intervene. Way to go! That's fantastic that you were so assertive and informed!

My sister recently had a baby and had a similar experience, except she was not as informed or assertive and ended up with a major separation from her baby (for the light therapy), and a poor start to nursing. As a result, it was a very rocky road, she had to supplement, and is now fighting like crazy to keep up her milk supply because she wants to EBF. Her poor baby still wasn't up to birth weight at 3 weeks, despite her nursing and pumping literally every hour round the clock. The poor baby was just too weak and sleepy (perhaps after having gotten a bad start in the hospital). She's had 3 weeks of endless lactation consults, visits to the ped, weight checks, and even a visits to a children's hospital to xray the baby to make sure all is well. In fairness, I don't know the details on billirubin levels, etc., in her case, but I can only wonder whether it might have been different if they had refused stuff as you did. I suspect she would have been better off just nursing at home with the baby without all the medical hoops to jump through.

[APToddlerMama]

[QUOTE=crunchy_mommy;14912289 I think this right here shows the problem with hospitals pushing formula on jaundice babies (and other conditions that may or may not need it) because how will we know when the situation is "serious" and when it's just bad hospital policies? It would be quite clear & obvious if they only recommended treatment in situations such as yours. I don't think most of us would argue that your baby's situation was extreme & needed intervention. I don't understand the disconnect in hospitals... on the one hand we have babies like yours being discharged when they should stay, and on the other we have doctors pushing formula, bili lights, sugar water, etc. for less severe or even "normal" newborn issues!! Makes no sense & I don't know how we're supposed to figure out when to trust them & when they're overreacting or basing their treatment on outdated practices...[/QUOTE]

I agree. You just can't rely on medical professionals to give you the info...you really do have to research a lot of it yourself or you deal with them over or underreacting frequently. So frustrating!

[*Aimee*]

Seriousness of jaundice levels will vary based on the age of the baby as well as the numbers.

My DS was a few levels away from needing a full blood transfusion when he was a week old from his jaundice.

Both of my boys have had really bad jaundice, they were both 36 weekers too.

[Emmeline II]

Bad hospital policies are bad policies; it doesn't mean that we don't know the potential seriousness of jaundice.

I was offered a billi blanket so I could hold and nurse my child and the hospital never pushed formula 'just to see what would happen.'

[ramama]

Sorry, I've only read the original post, but wanted to offer a hug, and a BTDT, kind of. My firstborn had a level of 19.5 and the hospital urged us to bring her back, and we did. I still kick myself for that. I didn't join LLL until a bit after her birth, so I didn't know that a little bit of sunshine would have sufficed. I *did* know, however, that BM flushes out the bilirubin better than formula. Luckily, the ped encouraged BFing, but I think he assumed that it would be done "on a schedule" rather than on demand. The hospital allowed me to room in with her and brought in a bed. I nursed her, removing her from the light bed, every time she wanted. The nurses became annoyed that I was taking her from under the lights so often, and I became paranoid that while I slept, they would give her formula, but they didn't. In hindsight, I'm amazed that I got out of the hospital with my nursing relationship intact.

A funny related story, when I brought her back to the hospital, the intake nurse asked me if I was FFing or BFing. I said that I planned to BF exclusively. She asked if my milk had come in yet, and I said "I don't know, I don't think it has yet." Then the nurse looked down at my shirt and said "I think it has." I looked down and my shirt was SOAKED from the neck band to the hem, completely saturated. LOL. Guess with all the stress I didn't realize that my shirt was soaking wet, although you'd think that a Montana January and a wet shirt would have frozen me.

[APToddlerMama]

Originally Posted by Emmeline II

Bad hospital policies are bad policies; it doesn't mean that we don't know the potential seriousness of jaundice.

I was offered a billi blanket so I could hold and nurse my child and the hospital never pushed formula 'just to see what would happen.'

I think those of us who mentioned the seriousness of our childrens' cases just wanted to be sure that *in case* not everyone realized this, that we provided some balance to the conversation so that one might not wrongly assume that there is never a time in which jaundice should be treated and put their child in danger. My son's case was so serious that a billi blanket would not have been enough.

[greeny]

Yay for you! I'm glad things went well, and that you and dh stuck up for what you knew was right.

With my first dd, the hospital insisted on formula when my baby had a bili level of 12. I didn't know better, so I switched to formula. I won't go into the details about how difficult it was to establish nursing after that (though we did! and she never took a bottle again after the first few weeks! and we nursed till she was 2.5!), and I'm STILL mad at the hospital for that, even though it's almost 7 years ago now. I actually wrote them a letter a few months after her birth letting them know that I wasn't happy with their advice/care.

[newdawnnewday]

seeking support & sanity

without going on and on, here is my basic situation. my DS born by vbac 1/5/2010 was on the billi blanket and not showing improvement. after one week i was told to stop the light and pump and store my milk and give formula. i said no and that i'd bring him in in one week for his 2 week check up.

at his 2 week his level had risen from 15.1 to 15.7. this time i have been told to supplement with formula after each nursing. i don't want to and i don't feel these levels warrant such action. i DO wonder why he didn't improve with the light but i feel at 2 weeks old and these levels, it shouldn't be such a huge concern. he was back at his birth weight by 5 days old and at 2 weeks he is a full one pound and one ounce over his birth weight.

i am kicking myself because this is my fault. my oldest born 7/2002 by c-sec was under the lights in the hospital, while i was out of maternity and in observation waiting to be diagnosed with e.coli, my DD born by vbac 4/2008 was on the light for 6 days. because my first two 'needed' it, i thought i was being proactive by having her bili levels checked, even though she tested low risk at the hospital. had i waited to bring her in for her 2 week check up, they'd be suggesting the light now, not trying to push me to use formula and treating me like i don't want him to get 'better' because i'm not agreeing to it.

i have a hard time saying all the things i really feel - like that any treatment at this point is overreacting and isn't it early with these levels to be so concerned? i just needed to share this somewhere as i continue to read thru other mama's experiences. of course i want my DS to be past this and if formula was THEE cure to some awful experience he was having, i'd be all over it. i just don't feel that it is. and my ped is supposed to be alternative embracing so i don't get why he's pushing formula. ugh ugh ugh.

thanks for reading.
Amancia
2x vbac mama to Deepak-7, Sanjana-21months & Rishi-2 weeks

[rlmueller]

So I'll be stupid here

Why would formula be recommended over breast milk. Why not breastfeeding with b'milk in bottle. What gives with the magic power of formula to cure jaundice? I'm totally serious--I don't know this.

[CallMeMommy]

Originally Posted by APToddlerMama

I think those of us who mentioned the seriousness of our childrens' cases just wanted to be sure that *in case* not everyone realized this, that we provided some balance to the conversation so that one might not wrongly assume that there is never a time in which jaundice should be treated and put their child in danger. My son's case was so serious that a billi blanket would not have been enough.

You said that your son was preterm - that's a COMPLETELY different ballgame than normal newborn jaundice. You can't really compare the two.

[APToddlerMama]

Originally Posted by rlmueller

Why would formula be recommended over breast milk. Why not breastfeeding with b'milk in bottle. What gives with the magic power of formula to cure jaundice? I'm totally serious--I don't know this.

For me, I was not producing enough milk even though I was *literally* breastfeeding or pumping 16 hours of 24 (not joking or exaggerating one bit). The main reason probably was because I was under so much stress and my son didn't have a good suck, swallow, breathe pattern at that time.

[APToddlerMama]

Originally Posted by CallMeMommy

You said that your son was preterm - that's a COMPLETELY different ballgame than normal newborn jaundice. You can't really compare the two.

It might be or might not be. He was almost 36 weeks. Regardless, I still feel like it is important for this conversation to be balanced, because there are times even with full term babies that treatment is necessary, and to give an impression otherwise could put children at risk. That would only happen if a parent made an incorrect assumption from reading 20 stories about how terrible jaundice treatment is and that it is never actually needed. I'm not saying that anyone reading this would make that mistake and not do their own research, but as a couple of us have pointed out, there are times when it is needed.

[jeliphish]

DD1 which was a 36 week baby became very ill from jaundice. Her level was 13 when we left the hospital and they advised "window sill and nurse, nurse, nurse". At her 5 day check up, her bilirubin level was 27 and we were rushed to the hospital. I was producing *some* milk, but not enough to make her poopie as much as she should have. In the hospital (for 4 days before it came down) I nursed, fed 3oz of formula, and pumped in that order and gradually I was able to pump enough to replace the formula. I was thankful for the formula at that time- as I truly feel there was a need since I was not yet producing enough to make her pee and poopie which is the key to working the jaundice out. Surely there is a time and place for formula and jaundice... in most situations formula is suggested when it is not needed at all, but in a few cases, like DD1, I feel confident it was needed.

[Emmeline II]

Originally Posted by rlmueller

Why would formula be recommended over breast milk. Why not breastfeeding with b'milk in bottle. What gives with the magic power of formula to cure jaundice? I'm totally serious--I don't know this.

I think this comes from a misunderstanding of breastmilk jaundice.

[Emmeline II]

Originally Posted by APToddlerMama

I think those of us who mentioned the seriousness of our childrens' cases just wanted to be sure that *in case* not everyone realized this, that we provided some balance to the conversation so that one might not wrongly assume that there is never a time in which jaundice should be treated and put their child in danger. My son's case was so serious that a billi blanket would not have been enough.

No one said jaundice should not ever be treated, just that the hospital policies were not appropriate, or not appropriate in their situation. Separation and withholding of breastmilk is not appropriate for the typical jaundiced newborn but seems to be almost universally recommended; disproportionate responses to relatively low bilirubin levels, common. Breastfeeding and sunlight is treatment and should be the first recommendation, not separation/formula/an incubator for a 16 level.

The reason this came up at all on the lactivism board is that formula substitution is the typical kneejerk reaction to jaundice, but rarely actually necessary.