Breastfeeding an alagilles baby

My little man is 14 weeks and was diagnosed with alagilles 4 weeks, suspected in pregnancy as his dad has alagilles. He also had a VSD ( hole in heart) until last week when he had surgery to repair it. I have breastfed him since birth as well as ng tube feeding him caprilon and expressed breastmilk from a month, now he has the energy to feed he is breast fed and tube fed the caprilon (trying to start him on bottles) just wondered if anyone else had experience of breastfeeding an alagilles baby as I feel like I am fighting with the dieticians to keep him on breastmilk. Thankyou xx

10 Replies

  • Hello. My boy has BA not alagilles and I breatfed him alongside the special milks. I felt as though I had to really stand my ground with some dieticians regarding breast milk but he did well on this combination. I felt breast milk offered him a huge amount that formula couldn't, while recognising that he needed the medium chain fatty acids in caprilon and the other milks he had. I used to give him the formula first (in a bottle) then "pudding" (a breastfeed). He was nearly 2 when I stopped nursing him to sleep. I feel it was one of the best things I could have done for him. As you say, it did feel like a battle sometimes, but was worth it. He's now 4, and growing really well in weight and height and loving school. I hope you find this helpful and that it works out for you.

  • Thankyou this has really inspired me to carry on, I just can't understand why they are so apposed to BM, I can understand that he needs caprilon but why can they understand that , as you say, will give him things that no formula can! Xxx

  • Hi there. I have a daughter with Alagilles - she's 12 now - and I breast fed her as a baby for the first year, combined with Caprilon, then BCH liver feed, and then with Nutrini (she was also NG fed during this period). I gave up while she was in hospital having her transplant but managed to restart again. I thought it was important, and remember most of the staff involved as being generally supportive, as long as the breast milk was a supplement to the other specialist feeds. I hope that's some encouragement for you. I would persevere if it's important to you.

  • My son is 21 and he was breast fed for about 2 wks but he was fed on Pregestimil and thrived really well but yes a long time ago now!

  • Thank you, I breastfed him up until he was 5months, 1week and 4 days when sadly I found him dead in bed the morning of 15/3/13. We do not yet know the cause xx

  • I have left you a message underneath this I hope you dont mind me asking does you husband have an problems and when was he diagnosed as having Alagilles Syndrome?

  • My husband was born in Canada in '91, the healthcare was not as developed as the uk so after 3 months of not knowing what was wrong with her very ill baby ( jaundice, itching, constant crying and failure to thrive) my mother-in-law came back here. She went straight to kings where he was diagnosed with alagilles immediately. He was very ill and in hospital most his childhood having a billiery diversion and then a transplant at the age of 6. He is now very well, has enjoyed an active sporty lifestyle and takes no medication. Ricardo (our son) was not as ill as my husband when he was born and his VSD was the main health problem. After surgery he put on weight, wasn't yellow anymore and was developing like a normal (small) baby.

  • Thank you it is interesting the varying degrees of this condition. My son is healthy and well he has been through heart surgery in the past to insert 5 stents but is well. Very best of luck with your pregnancy :-) I went on to have another son who has not got Alagilles so fingers crossed for you.

  • I am so very sorry to hear this I will say a prayer for you and your family. Was he your only child? I hope you find out what really happened but sometimes there is never any answers I always remember a saying which always helped me through difficult times... Better to have loved and lost than never to have loved at all.....

  • Thank you, yes he was our first and only, however as he was getting more and more stable and we had less hospital visits we decided to try for number 2 just before Rico died. So I am now 15 weeks pregnant with it being 14 weeks after Rico became an angel. I bring myself a lot of comfort from that saying also as I am so thankful I had him in my life for those 5 months and had an amazing pregnancy with him. I saw him smile, laugh, grow, swim and so much more :). I have question about pregnancy with I may post soon ha. Thank you again xx

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