newborn with jaundice, GGT & bilirubin levels high

hello all,

i was wondering if someone with a small baby went through somthing similar and could share their experiences? since our 20days old baby was born, we've been through hell and this is one more issue to add (also hip displasia and heart issues).

he started to have jaundice and high bilirubin levels and was admitted to hospital by 6days old. the bilirubin levels went a bit down after 2days with liquids transfusion only. by the time we left we were also told GGT levels on liver was also high. As we are also dealing with otherhealth issues and many medical appointments plus exams, they left this issue for some days and now the blood was checked again (and poor baby, they barely can take enough blood from his arms veins). Now the levels cane higher again for bilirubin and higher than before for GGT and they don't understand why. Did someone had this same issue? what was the outcome? do you think this all can be related also with hos heart issues? it's has been so difficult.. i jist wanted to hear for some other people's experiences... thank you so much!

[Dina1986]

Hi, my baby is 6 months old and since she is 2,5 months old we monitor her bilirubin levels and liver function, spend quite some time in hospitals, done lots of blood tests and coupe biopsies and even diagnostic cholangiogram when she was only 3 months old. Doctors suspect her having alagille syndrome but genetic tests haven't come back yet, so we live without any diagnosis, her levels still high , total bilirubin is about 80, dropping down but very slowly...they found heart problem too, pulmonary stenosis which causes heart mur mur...

my only advice be strong and trust your instincts, it's hard when something like that happens to your little one, but there is always hope and light at the end of the tunnel .

[Hidden in reply to Dina1986]

thank you so much for your answer. I am sorry to hear about all that you went through... It is really difficult. I am crossing fingers for the genetics to come clear and good. We will also do the genetics, but not for now, as it's so hard to take blood. The heart murmur was found right in the beginning and doctors made a whole dark picture regarding all those things together (and we weren't still aware of this bilirubin and GGT). Some days are really hard, but some others I have so much hope that all this will be solved and he becomes a very healthy baby. It's such a mix of feelings. And I have another little girl with 2yrs old.. she is so happy (and always have been so strong and healthy), I am so afraid this isimpacting her happiness in any way... I just hope we will all manage to keep healthy and happy ❤️

lots of luck and health for your little one and i am crossing fingers that everything will be alright ❤️

[Dina1986 in reply to Hidden]

Thank you! Be strong for your family, I know its hard, I have the same mixed feelings but trying to keep positive, none of us has certain future, how many people just get killed in car accidents everyday. We should enjoy the present and spend quality time with kids and family and the rest will settle itself! Hope everything gets great for you and you family as well! 🙏❤️

[vint]

Congratulations on the birth of your little one and sad to hear of all the difficulties you are having at the moment. Our daughter had high bili and GGT and clay coloured stools at 6 days old and we pestered and pestered the GP until I was admitted to hospital and refused to be treated until they checked my baby. She had high GG,ALT,AST and bili (congregated) etc. She was finally diagnosed with biliary atresia at 6 weeks old. She is now 12 and leads a normal life with no meds and just check ups once a year. When she was a baby I thought that would never be the case as she spent most of her first three years in hospital. I know some children with BA can have other problems usually spleen malformation. My advice is keep strong and keep demanding answers to get the best you can . Are you being seen by a specialist liver unit? Keep babies arms and feet warm before bloods as it makes finding veins a little easier. I find blood taking the hardest bit, we had a rule in the early days no junior doctors and only two attempts per Dr. Don't be afraid to say stop you"ve had enough attempts please ask someone more senior or an anaesthetist to try. Drs who have had lots of A and E experience tend to get veins quicker and easier.

Thinking of you and your little one.

Hope and hugs

X

[Hidden in reply to vint]

thank you so so so much dor your answer and for sharing your experience. I am happy for you that your daughter recovered from all the problems and has a normal life with no meds! I am totally new to this, I don't know much and got even afraid to research.. We are being very well accompanied by doctors, although it can be hard to live far away from family and living in a country now which we don't speak the language. We are being followed by private but once in a while we have to go to a public kids hospital and can be harsh due to communication, but our pedi gas been amazing and always helping us out organizing these things. Yes, taking blood has been very hard both for baby and for us! We are today waiting to be called to go to take some blood and to make lots of tests to "rule out" some issues. Baby is still yellow, total bilirubin came high and direct bilirubin just a bit high. GGT levels also very high... So I am really scared. These are not even the issues which we came out from hispital after birth. I'm making a huge effort to remain positive, your message came to help ❤️ thank you!

[vint]

Hi

Thinking of you hoping you are nearer to some answers. Try to keep things as normal as possible for your 2yr old daughter. Its the one thing I still have lots of guilt about. I had to leave my 3 year old when our daughter was in hospital because keeping her alive and getting answers were the priority but in hindsight I wish I had taken some time out and let relatives stay with the baby whilst I had quality time with my 3 year old. She is now fifteen and when asked about that time she only remembers crying once when she had to leave us in a city 60miles away but she remembers watching the most TV she was ever been allowed to and the quality time she spent with my brother who has now sadly died. So search for those desperately needed answers but also try to do some normal family activities like a trip to the park even though it takes so much effort to do so.

Hope and huge Hugs

X

[Zuhal]

Hi my baby is 3,5 months now since he was 2 days we were in and out hospital for joundice we are being fallowed by kings college hospital which they are great finally last week they said he has allige syndrome and to confirm that they took blood from us I don't even want to remember this hard times now I am relieved that I know what it is so I understand how you feel but trust me everything is going to be fine what ever comes you except and live with it just try to busy yourself don't think too much as I did because it only does harm to your health as well like mine

Believe in god he is your guide good luck

[Hidden]

thank you all ❤️❤️ for sharing your experiences and advises.. 🙏🏻

things had a turn since yesterday, but of course.. nothing is never for sure, without proper genetic tests and proper diagnosis.

our baby started to struggle with eating, he didn't gain much weight since birth etc.. we had again some bloods done for liver issues (GGT and bilirubin which were before very high still..) and they found out his pressure in lungs was too high in the quick blood results (the liver ones came later). my son was immediately admitted in the hospital. his heart was with a failure. we knew already his heart issues, but we had no idea this was happening, we though he was bit sick (like all of us at home). they found some other heart defect in the main vassel (to join to the big hole in the lower ventricles). so, the news are: he will need an open heart surgery asap 😢

but we also had good news: in principle, the possible liver disease is ruled out since GGT had lower down to 600 by itself (they said below 800 they exclude liver disease and so that, they also excluded alagille..).

still, as he has heart defects they need to rule out other rare syndromes by the genetic tests. I think they already took the blood here, but no idea how it works.. I am just praying my son will be free of syndromes ❤️ I believe he will be ok and heart surgery is the best for him now and all will be ok. I believe in miracles, I believe it's possible ❤️

good luck for all of your children and may miracles happen everyday ❤️❤️❤️