What a year!!

1 year has now past since our little Tiffany was diagnosed with B.A. what a horrible time that was. She had kasai at 7 weeks which was unfortunately not a success. After numerous complications bleeds infections swelling and pretty much everything that comes with this. She was transplanted on 17 NOV 15. She has blossomed ever since that day. A few little hiccups along the way but she's doing great!! I hope anyone who may be at the start of there journey may get a little hope from this...

[YBiliaryAtrecia]

Hi, great to hear little Tiffany is doing well after the transplant. We are in the same boat. It's been 9 months since Kassai, her stool is still pale and her eyes are still yellow. Now we are at the beginning of thoughts that a transplant is inevitable.

We are very worried how that will change her's and our life going forward. She is doing well in terms of growth and active ness. Apart from weeks bones and yellow eyes she is doing ok. We only has one episode of colongitis.

We have been asked to come for a week of observation.

Would love to hear more about your experience during this difficult time. Omer

[Hidden in reply to YBiliaryAtrecia]

Of course anything you would like to know feel free to ask!

[YBiliaryAtrecia in reply to Hidden]

Thank you for sharing. You said that Tiffany had numerous complication. Did that all go away after the LT? How long did it take to see the improvement? Is she still on vitamins? More medicines than before? Sorry about the too many questions.

[Hidden in reply to YBiliaryAtrecia]

The jaundice cleared within hours of transplant and her bilirubin dropped from the 300 Mark down rapidly and is in the "normal" range now. She still takes some meds but not half as many as before and on Thursday the hospital dropped even more meds out as there so pleased.. she has her own awareness page on fb. You can follow her journey right from the beginning until late now on there,,,

[YBiliaryAtrecia in reply to Hidden]

This is very positive news for us. Hope our little one will brave through this ordeal as she did for her kassai. I am happy Tiffany has gone past this difficult challenge successfully and may she begin to enjoy her bright future.

Are you feeding her as normal and her growth level is up against the target etc.?

How long did you stay at the hospital?

Are there still chances of colomgitis after transplant?

Zahra only had one episode of suspected colomgitis.

Do you have to do the bloods every month? My little one's nerves are too tiny and doesn't bleed much.

Regards, omer

[Penguin8]

I have had a parent reach out to me who has a new baby with BA and the Kassai has failed and now they have been told transplant is the only option, I am not fully able to help and support as my Daughter has AIH & PSC, would you be willing to e-mail or allow them to contact you for some parent to parent advice & support??

[Hidden in reply to Penguin8]

Yes of course either via face book Wayne lothian... or email

[e-mail]

[Penguin8 in reply to Hidden]

Thank You so so much xx

[dhianne]

my son was diagnosed with b.a 9weeks and have had the kasai at 2 months and 18 days.. after the operation the doctor said ,that he havent seen any bile ducts from my son .. and said if my baby will not undergo to a liver transplant,there are posibilities that he will not made it 2 to 3 years from now im so sad because we dont have 5 million pesos to get him a liver transplant .. so we decided only to pray and let the lord to heal him even though its hard😔he is now 4 months and still with jaundice i hope that lord will help to heal my baby..

[Ailabs30 in reply to dhianne]

Hi.. My son was diagnosed with BA when he was 7 weeks old. He had kasai and he's doing good. I'm just wondering if you guys have health insurance ? Most insurance will cover the expenses for liver transplant.

[Hidden in reply to Ailabs30]

Our Daughters liver transplant came from a living donor who was her 20 yr old cousin, both girls were treated in our local liver specialist hospital in London. They were both done on the NHS. I can't fault it at all they were brilliant and continue to be on all our follow up appointments. So No I do not have health insurance...

[Ailabs30 in reply to Hidden]

How's your baby doing after the transplant? I'm so scared for my baby. I don't know how to cope with this situation.

[YBiliaryAtrecia in reply to Hidden]

I hope babyTiff and the donor are doing well. best wishes

[YBiliaryAtrecia in reply to dhianne]

Hi Dhianne,

Our thoughts and prayers are with you. I pray to God to show you a positive way.

Please reach out to your politician or appeal to your community for help.

newindianexpress.com/states...

Read the above story, may be this could give you a bit of hope to follow the route.

~Omer

[rebeca2016]

Hi, i feel identified with tiff story. I have a 4 month daughter, my little Rachel, she was born with ba, had her kasai at almost 7 weeks old. But is not working, dr already told me that transplant is inevitable, im so scared, i have no words to describe how i feel right now, she's my first baby, i imagined motherhood so different, she looks perfectly healthy, aside of the yellowing of her eyes. Im having trouble to put weight on her. She weights 12.9 ounces. Please give me some positive advice. How did the transplant go?

[YBiliaryAtrecia in reply to rebeca2016]

Hi Rebeca, our thought and prayers are with you and Rachel. We are in the same boat as you. My little girl is 11 months, this month is her birthday. She acts and behaves perfectly normal apart from the yellowness in her eyes and the bloods. There are no bits of papers or tissue paper left on the floor without being scanned by her sharp eyes. If she finds one, it take milliseconds to reach her mouth. she keeps us on our toes all the time. For the last three weeks she only gained 100gms. Our worry has started and the very next day to her birthday we have been booked for a Transplant assessment. The one week will be hectic and intensive, lots to digest I guess.

I hope the best for Rachel. I really hope there was some remedy out there for BA so our babies don't have to go through this route. God knows best.

~Omer

[rebeca2016 in reply to YBiliaryAtrecia]

Hi! Thanks for answering, i feel the same way as you. When dr told me we could wait until her first birthday i freaked out, what if she doesnt make it? But he assured me that most ba babies wait till they are 1 for the transplant if her health stays stable. I would like to know how much weights ur daughter, how about her direct bilirrubin, rachels bilirrubim last time was 6.7. And the coagulation of the liver is still good? Waiting is killing me slowly. I appreciate so much that you replied. I dont know anybody with this disease that i can relate. Have a nice day, i wait for your answer. Greetings

[YBiliaryAtrecia in reply to rebeca2016]

you are welcome Rebeca, Zahra weights 7.4kg and has 272 total bilirubin. We were terrified when we learned that my brave girl had BA and was hoping the Kasai would be successful. Turned out the other way. Health Unlocked arrived as a good forum to meet other parents who go through the similar situation. Zahra's GGT dropped from 2000 to 147 over the course of few months, however the bilirubin show no signs of going away. Her liver enzymes all kinda stayed in the same level and not gaining enough weight now.

She suffers Vit-D deficiency. She is now on a high dose for that.

Please feel free to ask as many questions as possible. I feel the same way as you are.

I can't remember what was her weight at 4 months, I will check and let you know. How much weight does Rachel gain every week? Where did you have the Kasai done?

[rebeca2016 in reply to YBiliaryAtrecia]

Last time i went to the doctor she was gaining 13 grams per week but in the last 3 weeks she only gained 6 ounces. She had the kasai in miami children's hospital. Her ggt last time was 1447. It dropped alot after a round of antibiotics when she was in the hospital after the kasai

I was wondering if it would drop again with more antibiotics so the inflammation within the liver goes away and ducts may open and kasai starts working, thats all in my mind. I told my dr but he says how to justify if is cholangitis if there's not fever? So i think transplant is whats left...coagulation of the liver is still good in your daughter? Rachel's taking pregestimil formula 24 calories, im waiting till 6 months to start solids. Do you put liquidgyn or any mct oil in her food so that she can absorb it better?

[YBiliaryAtrecia in reply to rebeca2016]

sent a message to inbox

[rebeca2016 in reply to YBiliaryAtrecia]

Hi how's your family doing? Did your baby get the transplant already? How is she doing?

[Hidden in reply to rebeca2016]

Yes my daughter was transplanted a year ago now when she was 7 months old, she received a part of her 20 year old cousins liver and are both doing great now x

[Hidden]

Sorry for late replies was on our first foreign holiday since tiff had her transplant and it all went well. She seemed to do better in a warmer climate. She loved the pool and sunshine, and her siblings loved the holiday also and so deserved it after the year they had!