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Alec's Story - Age 3
"Alec had a chance, we had HOPE!"
Alec’s birth in 2003, was a full term natural delivery. We went home and did all the usual things for a second child. With a number of visits to the GP, we were concerned because the usual jaundice in his skin and eyes did not go away and after a few weeks, seemed to get worse. We were told the standard old wives tales such as ‘make sure he gets a good dose of sunshine!’ etc. We live at Bondi Beach so there was no shortage of UV rays.
Finally, following the immunization visit at 8 weeks, we were referred to Sydney Children’s Hospital Casualty to see about tests re his jaundice. Blood and urine tests were taken and we went home to await results. The results showed that there were high levels of bilirubin and the case was being referred to Gastro Specialist, Dr Reuben Jackson, and we should admit Alec on Monday for an extensive series of tests. We did this and
Alec had many progressive elimination tests, scans and finally a liver biopsy.
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He was diagnosed with Biliary Atresia and was to be operated on. Dr Shi, a specialist surgeon, performed a Kasai procedure to help achieve bile flow from the blocked liver. After a month in hospital, Alec finally was allowed home on Christmas Eve!
The Kasai procedure was successful and allowed Alec to have a couple of years of relatively normal life. Over time, the toxic bile build up was damaging his liver. He suffered terrible itching and we saw our beautiful boy’s energy flag. Whilst medicines helped in the short term to keep him alive, ultimately he needed a full liver transplant. In these types of cases the patient needs to get worse before they can get better as their case is escalated up the transplant waiting list. By 2.5 years he had got worse, to the point of moving on to the urgent waiting list for a full liver transplant. From this point on, our lives went on hold, waiting for that call! We were not allowed to venture further than 2 hours drive from Westmead and our mobiles had to be on 24/7 for the transplant call.
He was on the high priority waiting list for 7 months. We all spent a week in June at The Children’s Hospital Westmead doing the transplant work up. We met the large team of professionals, led by Dr Michael Stormon, who would get Alec (and our family) through the challenge we had before us. It was then simply a waiting game. Leading up to the transplant, he needed regular monitoring tests and short stays at Westmead Hospital, which my wife and I took turns in attending.
Finally, in January 2007, at 1am we received the call to bring Alec into the hospital. While my wife had had the mobile practically attached to her for 7 months, the call came in on the home phone. My wife awoke and said: “Who could be calling at this late hour!” I said: “It can only be one person, the transplant team!” And it was! We threw a suitcase together, bundled the sleeping children in the car and set off on the most amazing family car trip we had ever had. We had butterflies and a sense of excitement as we drove. Alec had a chance, we had HOPE!
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As soon as we arrived, Alec went into surgery led by transplant specialist surgeon Dr Albert Shun, AM. The whole transplant process was handled very sensitively and appropriate efforts were made to prevent the recipient family from meeting the donor family. He was in surgery all day and intensive care for about 25 days due to some complications. Our boy finally stabilized and was moved into the isolation ward for a further 2 months.
It was a rough recovery. He was not talking, or walking, or even sitting up. He was skin and bone and just stared blankly around the room. We were desperately worried that the miracle we had hoped for would not turn out as expected. The wonderful Liver team at Westmead would not let us give up. One day Alec smiled and the rest gradually fell into place. Finally our beautiful boy bounced out of hospital, charming the nurses on his way out the door.
Alec is still a regular at Westmead, but mainly for monitoring purposes these days. Without the magnificent gift from a generous organ donor family, Alec’s story would be very different! Only a few months have passed and now when you see him running around like a boisterous 3.5 year old you are amazed that you are looking at the same boy! He is such a miracle and aside from maintaining a daily medicine routine, he will grow up normally.
As you can see his protective sister, Ashley, is very happy to have her play mate HOME!