Haemophagocytic Lymphohistocytosis ~ "Willow's Story"

Willow Rose Costa came into our lives on the 10th of July 2008 at the Cairns Base Hospital after a very healthy pregnancy. My doctor would tell me i was boring as at every visit as she was growing fine and everything looked perfectly normal. Unfortunately this all soon changed after she arrived. 

Early on the second morning the nurses had noticed that she had a slight temperature which couldn't be explained so she was taken to the special baby care unit. After a few tests they discovered that her blood wasn't clotting as her platelet count was extremely low. They supplied her with clotting factors and blood to see if they would jump back to normal but unfortunately they didn't get any better. This went on for a few days and after more tests the doctors discovered her liver was starting to fail with still no explanation why so we were sent to Townsville to the Neo-natal intensive care unit. After only a day and many more tests and questions the doctors finally realised this was a little more serious and we were sent to the Paediatric intensive care unit at the Royal Brisbane Children's Hospital.

 The doctors in Brisbane tested for many things when they finally decided that all the symptoms pointed to a very rare immune disorder called Haemophagocytic Lymphohistocytosis or HLH which they couldn't confirm for sure until test results came back . They had started Willow on chemo drugs not to mention all the other fluids that were supporting her liver, kidneys and by now her heart and also they were still giving her clotting factors and more blood and pain medication. The treatment, that is not always successful, was to be a bone marrow transplant if she were strong enough to fight on but unfortunately on day 13 our little girl could not win this battle. Her small kidneys could not process the fluid quick enough so it was straining all her other organs,her body needed time for the treatment to work but it was the treatments combined that were too much for her little body to handle.

We learnt the condition was caused from a missing gene passed on from myself and my husband. We both were not aware we were missing a gene until now which is extremely rare for one of us, let alone both of us. Basically this meant her immune system didn't form properly and was fighting her rather than for her.My husband and i both had genetic testing to confirm the gene mutations, as they are called and we are waiting to find out whether there any pre-natal testing will be possible for future pregnancies, so far there is none available in Australia but i have read through the net that they are doing testing in the USA and Sweden so hopefully soon we will have that technology too. She tried as hard as she could but unfortunately it was all to much. Willow taught us so much in her short time with us and we will never forget her.

Willow Rose Costa, only with us for 13 days but forever in our hearts.