Stories of Lost Children
Beautiful Aliyah
by Christelle, Sydney, NSW, Australia
Our baby, Aliyah, was born on 19 June 2005. After many years of trying to have a baby we were delighted to finally have our dream come true through the help of IVF. I had an ideal pregnancy with no complications, when Aliyah was born she was a healthy 3.7kg and was beautiful with lots of black hair. At this stage we didn't know she had any problems. After I took her home I noticed she had a spot under her big toe, I took her to the doctor who said it was just an infected toe nail and prescribed antibiotics, after a couple of days I discovered a lump in her groin and we rushed her to Westmead Children's Hospital. To cut a long story short we discovered Aliyah had what was called "Severe Chronic Neutropenia" which is an extremely rare blood disorder where there is an absence of a white blood cell (neutrophils) which fights bacterial infections (thus, this is why she developed an infection in her toe and lymph gland) after many weeks of her being in hospital on antibiotics and after many tests it was decided she would need a bone marrow transplant. She had a very rare bone marrow type so even though my husband was just a half match, he was our only option. Before the transplant Aliyah needed a trachy in her throat to help her breathe because she had developed ulceration in her throat, she had also developed a fungal infection which had eaten through the palate of her mouth. Everything went ok with the transplant, though she had side effects from the chemo, the doctors were happy with her progress. After a while though she developed fluid on her lungs and nothing seemed to help this. She had to be on oxygen and eventually she had a cardiac arrest in intensive care (they don't know exactly why). She was revived but it took 40 minutes which caused significant brain damage and we were told she would not recover so her ventilator was turned off and she died a day later on 23 December 2005. Our beautiful baby was gone, which is still hard to believe. Our baby spent her entire life in hospital (all but a week) and the only comfort we get is to think she is at peace, without medications, tests and injections. cdardagos@hotmail.com
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