Hello
My son is two month old , and he's diagnosed biliary Artesia , He's a premature baby and weak by health. By birth he has destro cardia and situs inverses aswell.
We are very much worried as parents, as we think that surgery for such weak baby will be a great risk , but doctors saying that surgery is the only option.
Kindly help us with any suggestions, words of hope or anything that could keep us strong
I’m sorry to hear about your son. My daughter just had the surgery on Friday. It was a six hour surgery. Recovery has been tough, the first two days pain management was the hardest... but we got thru it. She started back on formula today. She is getting stronger every day!! I pray for your son, prayer and faith is what has gotten me thru this difficult time! Please keep me updated
Thankyou so much , I am so glad to hear about uiur daughter. May she keep growing healthier ahead .
After reading your experience I amm feelling bit stronger to take this step
We are advised to get Operative cholangiography first , If results could not be achieved , they gonna do Kasai process
Lots of prayers needed
Thankyou
I am very sorry to hear about your son but believe in god everything is going to be fine babies are stronger than we think I know how hard as I’ve been there when it comes to our loved ones it’s really unbearable I pray a lot to get trough this horrible times
All you need is pray, some time, acceptance and hope never lose it
All the best xx
Thankyou so much , I am so hopefull after getting different responses here
Lots of prayers required
Thanks
Hi
Congratulations on the birth of your son and sorry to hear things are not too good at the moment.
Our daughter has BA. Its really important that the Kasai is done early as these children have the best chance of a great outcome. Talk your worries through with the medical team and don't be afraid to share any worries or concerns with them.
I remember handing my tiny baby over to go to surgery distraught that she would not make it out the other end but she fought hard through the tough times and she has the scar to prove she was stronger than the enemy that is BA.
She is now 13 year old on no medication and top of her class at school.
Sending a massive hug to you and your baby and hoping all goes well for you.
X
Thankyou so much , I am so hopefull, and left all on God , may he be with this lil angel. I am in Pakistan , yet tried the best surgeons here.
We are advised to get Operative cholangiography first , If results could not be achieved , they gonna do Kasai process
Lots of prayers needed
Thankyou
OC first seems to be normal practice just to confirm BA then straight to Kasai. That was the same for our daughter. Have you got a date for the op yet?
Stay strong
Hugs and Hope
X
Hi MadiHassan,
Congrats on your new born baby. I am very sorry for what you are going though right now. Believe me i was in the same shocking situation nearly 2 years back and this forum gave me hope after sharing my experience and knowing what other parents' experience.
My brave little girl was 5 weeks when i handed over her to the surgical team for Kasai and trust me BCH have some of the worlds best team of surgeons and doctors. I was told that she was a bit naughty in side the theater refusing to wake up. But she fought back through to a good recovery. Unfortunately her Kasai did not work and we had to go down the Transplant route after 11 months. Its coming up to one year post transplant and she is growing up nicely. Currently she is a madam in the house and a star entertainer for us in the house.
I took her to umrah last year. One thing you never give up is hope. Keep your prayers on and have faith in the skills of doctors and surgeons. At the moment your baby needs a lot of love and affection. I strongly believe that its the love and care from me and my wife gave my baby girl strength to fight back.
I wish you a lot of strength and pray for your child's full recovery. Please do ask any question you may have. It is important you clarify your doubts. So feel free as any questions in this forum or pm.
Thankyou so much , I am so hopefull, and left all on ALLAH , may he be with this lil angel. I am in Pakistan , yet tried the best surgeons from, Shifa International Hospital annd Quaideazam international Hospital ,let's see
We are advised to get Operative cholangiography first , If results could not be achieved , they gonna do Kasai process
Lots of prayers needed
Thankyou
Hi!!!
I'm sorry to hear about your sons condition! As everyone has mentioned to you, babies are stronger than what we think and if doctors decide to go ahead with the operation is because they have checked that your son is fit for it.
Is not going to be easy but think that at some point things will be much better. Some of our kids have had more 'downs' than others but all of them at the end end up having good lives.
Please let us know if you want to talk and please keep strong and positive.
Take care and please let us know how everything goes.
Also be aware that recovery is slow and only after 2-3 months doctors might have an indication if the Kasai was successful. Refer to your doctors with any doubt you may have, remember there's no stupid question and it will help you feel better too.
All the best!!!!
Hi everyone. I thought I'd share my story. I had my daughter at 35 weeks on October 13th. She's 2 weeks old tofay. Day 3 her stools went from meconium straight to a fluoro yellow then within hours to a very pale yellow with a greasy look and feel. I had had gastro for the 3 days prior to labour right up until active labour started it disappeared until lunch time the next day when I had the runs for another 24 hours. Due to that fact the doctors put the still colour down to a tummy bug caught from me. I wasn't convinced. Day 5 I was seriously concerned but the doctors were not at all. I decided to do my own research and the first thing that popped up was biliary atresia, I must have read at least 50 scholarly articles that night i demanded to speak to the doctor at 230am and at 4 they came in and she completely blew me off saying how rare and unlikely it was especially in a premmie. I didn't get a wink of sleep. The next morning my midwife came in and I told her how concerned I was and she bought in a different doctor I asked her to take the conjugated bilirubin bloods and she agreed, within an hour they rushed in saying we need to do an ultrasound, I'd read about them and what they would see on the images in BA so when I went with her and saw the screen I knew immediately we were in trouble the sonographer looked panicked and she got the head consultant and he confirmed what I was seeing, no gall bladder or bike ducts visible. We were immediately transferred to NICU where they began running a myriad of blood tests, so many needle tricks but Savannah took it like a champ. On day 10 she had a HIDA scan which also showed the dye accumulated in the liver with no excretion to the digestive tract. They did 2 delayed scans with the same result. Her doctors alerted the Sydney specialists who ordered a huge list of tests on stools urine and blood. My doctors grew frustrated as they said everything points to BA so we should begin to treat it as the most likely cause. Finally on day 13, yesterday sydney confirmed the diagnosis and we are now awaiting a transfer via airplane to sydney with royal flying doctors once a bed become a available, likely today or tomorrow fingers crossed. I hope they don't mess around once we get there and proceed with the cholongiogram and subsequent kasai if it is indeed BA. From what I've read it looks to be the most common. Type, type III. The head consultant has been telling everyone how, the mother diagnosed biliary atresia at day 6 and everyone keeps praising me for researching and pushing to be heard. The NICU nurses have never seen biliary atresia and are asking me lots of questions about it too lol. I feel like you need to advocate for your child and become an overnight expert. Knowing as much as possible and every potential outcome good and bad helps me cope. Our other daughter turned 2 2 days after savannah was born and we only gave her her presents yesterday the poor thing also ended up being rushed to hospital due to an asthma attack the same day we had the hida scan so all of us were in the same hospital at once but she also had a cold so I couldn't visit her and risk catching it and passing it onto savannah or the other tiny babies on the NICU.
NICU is quite confronting, the day we went up there was an emergency and the lady in the room next door lost her little boy Thomas, it made everything seem so much more real.
I though to myself if savannah needs a liver transplant and is waiting too long that i would give her part of my liver as they regenerate in days to weeks but I then found out she is O+ and I am A+ and I was so distraught. Fortunately O+ is the most common blood type so it may make finding a donor liver easier should it come to that.
I pray she comes out of this ok.
I had spray painted a dog crate with 2 cans of spray at 29+6 and the next morning I had threatened pre term labour and a top level fetal fibronectin test needed steroids and went on bed rest to 34 weeks, at the 20 week scan her gall bladder was visible. I read the material safety data sheet for the paint that indicated it was safe to use but part of me thinks it's no coincidence I had the preterm labour the next day and that the solvent levels in my blood may have crossed the placenta causing an environmental insult in her liver functions but when I mentioned it to the doctors they doubted it, I know not to blame myself and I'll probably never know what caused BA in my daughter but it just one possibility I have considered. Ill keep you posted as to how we go.
So sorry to hear it happened to your little one, but she is in good hands and all will be well. I also was blaming myself for doing wrong tings during pregnancy even I wasn't really doing anything bad, finally my daughter was diagnosed with alagille syndrome, and it was heart breaking as well...anyway now I doubt blame myself anymore because its genetic disorder but we have to deal with other sort of problems and I am very scared that I will never have healthy baby anymore .
Best for all of us is to stay positive, I believe in magic and miracles. Take care...
PS we also live in Australia, in Queensland, if you need some support or want to talk about it don't hesitate to write me, we also went through very stressful things and still dealing with diagnosis ... Its hard on your own.
I live in new Zealand. My baby has biliary atresia and i am blaming myself for mixing and spraying weed killer at 22 week - tho my pregnancy was a smooth sailing one.
She's 3 months old now. Had kasai at 5 weeks+1. Bilirubin coming close to normal but not yet normal (elevated by just 1 point last week) . ALT still raising. Blood tests makes me nervous every time.
There is always hope, And even my daughter has different desease I heard and read lots of positive stories about BA kids. They can have normal life and have families and kids and be happy the same like others. Its very scary from the begging but it gets better...hope Kasai for your baby will be successful and he will recover quickly .
💖
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