Some questions about BA for parents who’ve already been down this path...

[Heyladydee]

Does anyone know if indirect sunlight will help the jaundice clear a bit more after kasai procedure? I know there’s 2 separate jaundice issues but was wondering if the indirect sunlight would do any good.

Did any of your babies get diagnosed with an infection that may have been the culprit for the disease? If so, did any of the beautiful momma’s to these BA babies get sick during pregnancy that could have caused an infection?

I’m just trying to see if there are others in the same boat as me. Baby’s pediatrician said 70% of babies with BA had the CMV infection. Even though it’s not 100% proven that this infection is the reason for BA but doc said it was a common denominator.

[vint]

Hi

I think the lamps only help unconjugated bili and it is direct bili which is related to BA so I don't think so but I would ask your medical team.

I had gallstones when I was pregnant and pancreatitis after delivery of my daughter. I also hemorrhaged before birth but they don't know why. Maybe it was an infection?

I spent many years trying to figure out why and blaming myself. Try not to as its wasted energy. When you start thinking that way try to distract yourself. You did nothing wrong. Know that it took me many years to come to terms with her diagnosis but it has got easier.

I found other people (friends and family) didn't really understand the enormity of how I was feeling they said very silly and insensitive things but they thought they were helping. I became almost obsessed with BA. I know how hard it is but try to have time with friends and family over the coming months when you don't discuss BA Try to go for a coffee and not mention it but talk about his great smile, the walk you went on and how much you love him and feel blessed he is in your life.

Its not easy because we all want to know why this has happened to our little ones, but they really don't know. Remember you are strong. You are posting here and trying to find as much information as possible to help him. You are doing your best for him. My thoughts are with you and I am here to help as much as possible.

Hope and hugs

X

[Heyladydee in reply to vint]

Thank you Vint. I always think my infection caused it on my baby bc i had an outbreak during 1st trimester and then again in the 1st month after he was born. When my immune system is down my body breaks out. Both times i was taking medication and OBGYNs never said anything about my outbreak potentially being harmful to my unborn. It will take a long time for me to accept that it wasn’t anything i did or didn’t do. It just really sucks bc this is my only biology child it took nearly 5yrs for me to become pregnant. But I know my little one is a fighter. Thank you again for your support!

[vint in reply to Heyladydee]

Bless you. This the hardest time. Its all new and hard to take in. What you are thinking and feeling is normal for us BA mums. Also as a new mum you have lots of extra hormones running around your body making you more emotional than normal.

I think I kinda had to mourn the baby without BA I thought I had had and move forward with a different reality and lifestyle. This does not mean you love him less infact it probably means you will have to fight harder as his mother and be stronger. I think as he is your first baby it will be harder but know it is not quick or easy but you will get there.

What you are thinking and feeling is normal!. You can do this and on those difficult days just keep going and fighting.

I think of it like swimming you just need to keep going sometimes the waters are rough but at other times you can rest and tread water. As time goes on you get out of the water and chat with the other bathers they don't know the journey you took to get there and you chat and do things together that means life is just 'normal'. Sometimes you fall back in the water but its OK you are a strong confident swimmer and will keep swimming even if it has to be against the tide you are strong enough to get to the next shore line.

Huge hope and hugs

X

[Heyladydee in reply to vint]

Thank you again Vint! Extra hormonal is on point. I’m taking it day by day and am trying to enjoy my little one as much as possible ❤️ he’s been babbling so much lately, it’s adorable!

We have our GI appt tomorrow and pray that it’s a positive visit.

[vint in reply to Heyladydee]

Will be thinking of you tomorrow. Keeping everything crossed for you! Let me know how you get on.

Write all your questions down tonight ready for clinic! I thought that advice was only for dummies but the amount of times I have come out of clinic and realised I forgot to ask a question because you get caught up in what's being said and then forget, its so much to take in in the early days. The team won't mind they know how hard it is for us mums.

Top tip for bloods is keep his hands and feet really warm so the veins stand out. I used to put fluffy socks on our daughters hands 5mins before drawing blood.

Take care

X

[Heyladydee in reply to vint]

You read my mind! I jotted down all my questions already so I don’t forget tomorrow. Thank you for thinking of us! I’ll be updating you after our visit 💕

[M45984371]

Hi, the jaundice wouldn't be helped by indirect sunlight, we have found. In fact the health visitor brushed aside worries about the jaundice prior to the BA diagnosis and said "put her in the sun", when she should have said, "get to a hospital immediately"! (Only 8 weeks later did they finally say that to us). All good 11 years on, but its tough going through it.

[Heyladydee in reply to M45984371]

Thank you! I didn’t think it’d make a difference but was hoping ... lots of hoping and wishing lately .