Save Millys Life

Kamiilah-Ranee Ryan is 1 year and 4 months old. Kamiilah who we call Milly is a Biliary Atresia Baby.

   For the first 4 months of her life she cried continuously, her eyes were very jaundice and she would drink 6 plus ounces of milk at such a young age. With repeated calls to 111, visits to different A&E’s and paediatricians we where always turned away with a bag full of Gaviscon and a diagnosis of colic. Being a 2nd time mum and dad we knew this was not normal.

     Eventually we went to see our GP who gave us the same diagnosis and told us to hold Milly to the sunlight at the window which will clear her jaundice. Barring in mind her stomach was still very descended, her hair was growing with major patches and she was constantly crying.

The Diagnosis Journey

At 4 months we were blessed with a opportunity by her aunt to visit a private doctor. Once the doctor done every observation that every other doctor had done he told us to “take a seat “. With those words circling our minds and our hearts beating fast the doctor told us “your daughter is very sick and I cannot let you leave the hospital. She needs to be admitted”. I believe Kamiilah has Biliary Atresia and her liver is not in a good way. I can feel it.”

      You can only imagine the feelings that we were  feeling but relief that we finally got a diagnosis. Milly was admitted straight away for blood tests and observations. We where transferred to Kings College Hospital 3 days later after finding out she needed a major operation to help save her liver. Milly was also put on a special baby milk as her liver could not digest anything, hence the reason why she was drinking so much.

    2 days later we prepped for the emergency surgery called the Kasai. Milly was put to sleep and 1 hour later out of the 4 hour surgery I was called to come and collect her from recovery because they could not go ahead with the surgery after cutting her open and seeing that her liver was basically dead. Days later after recovery we where now on the road of pre assessment for a liver transplant.

     Fast forward 8 months, 9 medications 3 times a day, multiple hospital stays, blood transfusions, blood tests and painful sleepless nights Kamiilah fell sicker than usual, her stomach was more distended as usual and she was in a lot of pain so we took her to her local hospital where she was admitted. The next morning as we were waiting for ward round our nurse came in and briefly said “you are not leaving today” 2 minutes after this followed a phone call from Kings College Hospital to say there is a liver for Kamiilah we have to get in a blue light ambulance in the next 15 mins and make our way here. You could only imagine the feelings that were running through our body, but looking at Kamiilah and she having no clue while she eat her toast. It was a beautiful moment.

Liver Transplant Journey

We arrived at Kings College hospital on October 30th 2019. We got settled,did a few swabs for Kamiilah and blood test to makesure everything was ok and it was. Now it was waiting time. We waited for about 4 hours for the liver to arrive. We knew it had arrived by the convoy of medical team that came along. The nerves now set in. We prayed and we took the long walk down to theatre for Kamiilahs 9 hour surgery.

     The nurses gave us a call ever 2 to 3 hours just to give us a update of how well she was doing. This especially helped with the anxiety everyone was feeling. 6 hours later we got our final call to say Kamiilah was now in recovery.

Post Transplant Journey

We were prepared for getting a liver but we really weren’t prepared for the recovery journey. It was a very rocky journey. With 2 long stays in intensive care, a night where she struggled to breathe and had to be ventilated once again, high steroids which lead to withdrawal, not being able to hold her for 15 days, her swollen face and eyes...the list could go on but it was not a pretty journey.

      Finally after 20 days we were back on a normal ward and life felt back to normal. Milly  had physio therapy twice a week to get her stronger and sitting up. (Sitting up and crawling was something that Milly was no where near doing due to the large size of her stomach).





Post Liver Transplant

6 months later and we are here writing this as Milly runs wild around the house. Yes she is running,climbing, talking, eating the house down. Everything you could dream of she is doing. However this post transplant has not been easy especially of recent. For past 4 months Milly has been admitted a few times due to poor liver function numbers and extreme itching. This led to a biopsy being done which showed rejection. (Worst timing with the pandemic going on) With 3 days of a high dose steroid and multiple blood test we were discharged with great blood test results 4 days later. Now 3 weeks later we are back with poor blood test results and facing rejection for the 2nd time in 6 months.


The future

     With so much rejection in such a short space of time the nurses are very worried. We are now discussing options of what can help Milly, whether that be a new liver, a lot more medication, or longer hospital stays. We now have decided to seek medical attention from more places, back to our private doctors and possibly abroad to John Hopkins Hospital in the USA which is one of the best liver hospitals, due to the cost of medical insurance, travel and more theses options are only a dream at this moment and hoping with your help whether it be big or small we can make these dreams a reality.

     Thank you so much for reading and supporting Millys Biliary Atresia Journey.