Going home after surgery

If there are no problems after the Kasai surgery, your baby will be allowed to go home around 7-10 days after the operation. This will happen once you and the medical team are happy with your baby’s condition.

Before going home, the medical team will make sure that your baby’s wound is healing and there is no suggestion of infection anywhere in their body. You will be given or sent an outpatient appointment, plus a supply of medicines and feeds.

Your baby will need life-long follow-up by doctors, specialist nurses and dietitians. The hospital staff at the liver centre will advise your health visitor, GP and local hospital about your baby’s condition and any special care they may need. This means they can offer you support when you are at home. Your Clinical Nurse Specialist (CNS) will stay in touch with you, and you will be able to ring them for advice or reassurance whenever you are worried, so you are not alone.

When you get home you should try and treat your baby as normally as possible. We know it can be hard settling into everyday life after such a difficult experience, and you will be worried at times. This is completely normal. But remember that babies with biliary atresia get common illnesses just like other babies. There is also help and support available.

Remember – your hospital team and the Liver UK Children and Families team are here to support you every step of the way.

Back to top

Medicines at home

Your baby will leave hospital with a supply of medicines. After this, more medicines will be arranged through your GP. It is important to note that some medicines are not available straight away from pharmacies. You may need to order them several days in advance so you do not run out.

As with all babies, it is important that your child gets all their usual immunisations at the correct times. But sometimes your baby’s vaccinations will need to be delayed. Your medical team will advise you when immunisations can be given.

Remember: DO NOT give your child any medicines containing aspirin or ibuprofen. If your child needs medicine to reduce a high temperature, please use paracetamol (e.g. Panadol/Calpol). Speak to your medical team if you are unsure.

Back to top

Feeding and nutrition

If your baby was being breast fed before you found out they had biliary atresia, it may be possible to start breast feeding again. It is important that your milk has been maintained by expressing milk while your baby was unable to feed.

Most babies with biliary atresia are unable to gain enough weight on breast milk or standard formula alone. Your baby may also need a special milk formula suitable for babies with liver disease. These milks contain fats which are more easily digested and absorbed. Formulas with high calories may also be used to help your baby gain enough weight. It is often helpful for your baby to be weighed on a weekly basis to check how much weight they gain. A dietitian will be available to support you with feeding options.

Your doctor will also prescribe extra vitamins for your baby. This is because babies with biliary atresia have problems absorbing vitamins A, D, E and K.

Back to top

Back to top

Symptoms to look out for

When your baby leaves hospital, you will have regular follow-ups. There will also be support from your GP and health visiting team. But it is important to seek further advice from your GP or hospital if your baby shows any of the following symptoms:

• a raised temperature of 37.8ºC or more
• an unknown illness with a raised temperature
• jaundice with pale stools and dark urine
• your baby is generally unwell

If you have any questions, do not hesitate to contact your Clinical Nurse Specialist at the liver unit treating your baby.

Back to top

How do I know if the Kasai operation has been successful? 

At the time of the operation the surgeon will not be able to tell if the Kasai procedure has been successful. It usually takes around 3 to 6 months to know if bile is draining well from the liver to the intestines. The success of the Kasai procedure will also depend on:

• the age that your baby had the Kasai procedure

• the amount of scarring and damage that happened to your baby’s liver before the operation

 After surgery, the medical team will monitor your baby’s stools to see if the colour changes from pale/grey/white/ to a yellow/mustard colour. They will also monitor your baby’s urine to see if it becomes clearer and less yellow. If your baby is jaundiced, this should gradually fade in the 2 to 3 months after surgery. Blood tests will hopefully show that bilirubin levels drop towards normal levels.

Back to top