Pernicious anemia and breastfeeding, anyone know anything about it?

[kelzyboo]

Hi

Hope no one minds me popping in to ask a question, i honestly don't expect many answers since doctors don't seem to have a clue Just wondering if anyone has any experience of it.

I have pernicious anemia (auto immune disorder) and i want to BF my LO. Pernicious anemia makes me B12 and Folate defficiant, i can't absorb either and i have injections to replace the B12 that i can't absorb from food or supplements also high dose folic acid (even when not pregnant). I can't absorb it as i have antibodies against the intrinsic factor (what binds the B12 from food) My red blood cells aren't normal and my B12, after the injection drops quickly.
I also have very low absorbtion of iron Baisically i have nothing he needs They try to replace it but its barely enough to give me the vitamins i need, what bothers me is that if i can't keep my own body going , how can i provide nutrients for him?

Will i pass on my defficiancies through my milk? I know my antibodies 'could' cross the placenta, in which case he'll have pernicious anemia when he arrives but if i manage not to pass them, will i pass them in my milk?

I'm wondering if i should BF knowing i'm severely defficiant in vitamins he needs, is that whats best for him? I've read scare stories and i know that if he doesn't get enough i can make him very poorly which i obviously don't want to do

Doctors aren't used to seeing PA in someone of my age and don't have a lot of information on pregnancy and breastfeeding with it, part of me would prefer to FF from the start as i knw he'd be getting what he needs that way but i really wanted to BF, i regretted not BF'ing my DD and was devastated not to get the chance with my DS so it means a lot to me to try but i don't want to if its going to affect his health iykwim?

If anyone has any experience with it, any information or advice would be much appriciated
If not, thankyou anyway xx

 

[lisa1980]

Hi,

I don't have any personal experience of it but was wondering....could you get B12/folate/iron supplementation drops for LO whilst breastfeeding to ensure they get enough?

I just know that many premature and special care babies are given vitamin/mineral supplementation routinely so I wonder if the same would be available to you given the risk of deficiency...

I hope that you get some answers....is there a pernicious anaemia society or equivalent (maybe online) that you could contact for more advice as I assume many doctors won't know much about it as, as you say, it's unusual in someone of child-bearing age

 

[kelzyboo]

Thanks for that, i'm not sure but i can ask?
Its a start knowing what to ask helps!

There is a PA society but very little info for someone in my situation tbh, the drops are a good idea if they'd give them, thankyou xx

 

[Honeybear1976]

Hi I was diagnosed with PA and have been receiving B12 injections since I was 18. I have 4 children and all of them have been bf My 1st two children were full term and didn't receive any supplementary vitamins. Our 3rd was born at 31+3 weighing 3lb 4oz due to severe pre eclampsia, he had my expressed breast milk via a nasal tube till he could coordinate his sucking, breathing etc efficiently to bf. He was given iron and folic acid and multi vits for first few months. I am currently feeding my youngest, he was 6wks early and they gave me the supplement iron but I didnt give it to him and before xmas he almost dies of bronchilitis, chest infection and a collapsed lung and whilst in hospital they did blood tests and his full blood count was great so I'm glad I didnt upset his tummy with the medicine. (since having my 3rd I was also diagnosed with Ulcerative colitis and have to take extra meds and my health isnt great). The benefits of breastmilk are extensive so in my opinion there are no reasons I can see in your case to formula feed

 

[LucyJ]

I have PA and have successful BF my son who is nearly 8 months. He had to be delivered early at 36 weeks due to my placenta failing I was on iron tablets when pregnant and after as my iron levels dropped no surprise I got it up but still boader line.

My son was 5lb 4oz when born and we have had a few issues with weight gain but that was due to him having reflux we're now weening and it has helped, his weight has stabalised abd increasing well.

The advice I can give is make sure yout eating wellm drink plenty, continue with injections and if you want to bf then go for. Take care of you my son is doing well but BF has taken its toll on my body.

If you ever want to chat feel free to pm there is very limited info about PA especially when it comes to pregnancy & beyound.

 

[TigerLady]

I did find at least one case study where a toddler had severe neurological problems (which were reversed with treatement) after being BF by their mother. The neurological problems in the toddler lead to the diagnosis of PA in the mother.

In your position, I think I would consult with a specialist in breastfeeding -- an educated BF pediatrician or LC -- and discuss your PA and the pros and cons of supplementing with vitamins from the start. Those supplements of vits and iron are available for infants, but should be used with care.

Here's the article I found:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1438012/

I also found this: Which states a very serious deficency can be a concern in breastfed infants of mothers who are deficient.

https://emedicine.medscape.com/article/959918-overview

I would ask your gp or someone for a special consult. Like I said, specifically ask for someone very knowlegable in medicine and breastfeeding. You can also look at asking advice from Dr. Jack Newman. He is a BF expert and often helps in special cases. I think you can email questions to him and his team....?? Look around his website and see if you can figure it out:

https://www.breastfeedinginc.ca/

 

[Ozzieshunni]

I don't have PA, but I have an autoimmune condition as well. My antibodies damaged my son's heart.

Just wanted to offer some support and I hope you can find an answer

 

[kelzyboo]

Thankyou so much for all the advice, so happy to see others with PA have successfully breastfed and had no problems, give me lots of hope!!
Its deffinately what i want to do Will seek the advice of my doctor or possibly an auto immune specialist but its fantastic to see that its possible for me to do

Sorry that you're antibodies caused problems for your LO Ozzieshunni I have other rhesus antibodies too but thankfully, they're still at a low level. Hope your son is doing ok, he's certainly very beautiful x

 

[Ozzieshunni]

He's surpassed the odds He'll need a pacemaker one day, but it's not any time soon Maybe when he starts school.

 

[kelzyboo]

Thats brilliant, hope he continues to surpass all expectations x

 

[Texas mommy]

Hi all! I know this is an old thread but I had the exact same question!!!

I'm new here but have a 3 month old and was just diagnosed with b12 deficiency / pernicious anemia. This is my third baby and I am 37. The only way I was diagnosed was my baby's newborn screen blood test kept showing a deficiency. Since I am breast feeding him and had low b12 then he had low levels as well. We had to give him b12 shots daily for a month until the drs figured out that I was the problem. His shots stopped and mine began. It has been one month and is feel like a new person. I did not realize how bad I felt.

I am giving my son vit drops and now that I have injections he should be getting b12, correct? Also I am curious about the mum who said how breast feeding can take a toll on someone with PA? I really want to continue but do feel like the bf does take a lot out of me energy wise.

 

[LucyJ]

I'm glad you got the right diagnosis and you + your little one are doing well. I posted in this thread and said about it taking its toll it can do which is why you must make sure you are drinking plenty and eating well. Small meals often. I bf my son until he was 13 months (hes now just over 2 + half and a very happy little boy) I have since gone on to have another baby and my baby girl is 8 months I'm successfully bf her.

I think its important to make sure you take care of yourself baby will take what he needs from you.