My Story:


Weeks went by and I kept wondering why was Delilah still yellow? Why are her eyes like this? Is she okay? I don’t know why she’s still got Jaundice when I’ve been putting her under the sun everyday……

Hello, my name is Aga and this is the story of our Baby girl Delilah Masau who was diagnosed with Biliary Atresia.

At the 6 weeks immunisation at the doctors waiting to see a nurse to check up on Delilah. The nurse comes into the room to do her checks and before that she realised that Delilah has jaundice and that she is way too yellow. Both the doctor and Plunket nurse hadn’t realised that the jaundice Delilah had was a sign something was wrong. So, she gave us a referral to do a blood test straight after the immunisation. We got the blood test done and waited for the results. Delilah was alright and seemed to be like any normal baby, and I didn’t have any issues and I kept wondering why we had to do a blood test when she looks fine; that was until I got a call saying to go to Middlemore hospital. So, we packed our stuff and headed to the hospital.

Once there, the doctors mentioned that we will be staying the night. That night the doctors and nurses ran some test on her and as days passed by, they told us Delilah needed to get transferred to Starship Children’s Hospital and that she would need to do a liver biopsy. The biopsy was done by the doctor numbing a small area of skin on Delilah’s abdomen with a local anaesthetic, before inserting a needle to withdraw a tiny amount of liver tissue sample to check if it is Biliary Atresia. Delilah did her Biopsy and we were now waiting for results.

The next day the Doctor came and spoke to me telling me that she will need to have a Kasai procedure and telling me all of the procedures and I also got to speak to the surgeon and had a lot of questions for him, but my heart was racing so fast I just wanted to cry and hold my baby so tight because of how scary it all sounds. Everything was so unexpected and so she had surgery that week. The day of the surgery came by, and I was so sad for her, I really wanted to cry but I knew Delilah needed me to be strong for her, so I did. Supporting your child is important so being strong for Delilah was my job. We took her down to the surgery ward and then signed all the consent forms, and we also got to take her inside the surgery. When we walked inside I felt so emotional and seeing so many nurses and surgeons going to operate on one small baby. My father in-law who is the Minister of the Samoan Methodist Church was able to come do a prayer before we had to leave Delilah in the room. I came out of the room tearing up because she was only 7 weeks and so much was going through my mind and I didn’t want anything to go wrong.

We waited at the hospital for at least 5 hours until we got the call saying the surgery went well and they said we could go and see her. We ran down to see her and my heart almost broke, I felt so sorry for her, she was very fragile and she couldn’t move much she had a huge scar from her surgery and she had a lot of wires attached to

her. I was just so happy she was okay. She was moved into the surgical ward and that is where she slowly recovered from. Delilah could not eat or poo at the time, so she also had a catheter attached to her. A few days later she was very hungry and was ready to eat so the doctors let her have a bit of milk every 3 hours and as she slowly wanted more, we gave her more.

She recovered pretty fast and so she was transferred to another ward. As Delilah was recovering, she had good days and bad days. Some days she was losing weight or gaining weight and didn’t want to eat much because she was too tired, so we had to feed her through her tube. Doctors came and checked on Delilah and how she was going but she was still feeding through her tube so they said I could get trained how to feed her through her tube. So, I agreed and I had training and once the doctors were happy I was able to help Delilah with her feeds, they said we were able to go home. I was so happy to get out and see my older daughter Desire (Delilah’s big sister) as it has been 3 weeks since she been in hospital.

Finally, Delilah was discharged and ready to go straight home. During our stay at the hospital, it was amazing that we had so many helpful people around, lovely nurses and doctors that helped Delilah recover so well. We were very blessed to have a great team that helped Delilah through her journey and are still helping her till this day.

At three months old, Delilah is doing so well now and is such a happy baby. Her colour has changed to normal even her poo colour. She doesn’t have to have a tube for feeds anymore and is having all her feeds day and night and is gaining weight. The doctors have put her on a special formula to support her liver. She also has regular check-ups by the community home nurse or at the hospital.

We are so grateful and thankful for God’s love and guidance upon Delilah.

Thank you for reading our story.