Raife is their unexpected little blessing. Due to knowing that they had a 1 in 4 chance of having another baby with SCID, they had decided years ago not to have another child and had come to peace with that decision. However, nature had other plans, and they discovered they were expecting another little boy just before Sarah, his mother’s 40th birthday. Because of her age and previous pregnancy issues, they had to leave home for King Edward Memorial Hospital on the 7th of August and spent the next three weeks in Perth awaiting his arrival.
Raife was born on his due date, a perfectly healthy baby boy, and at six hours old, he was diagnosed with SCID. Due to their history, they had everything in place to have him tested and protected from birth. Thanks to SCID being included in the newborn screening in WA, they were able to quickly receive the results, making Raife the first baby flagged. Although they expected this news, it was still a bitter pill to swallow, knowing the isolation that lay ahead and its implications for the family.
Fortunately, the Sarah’s brother and his wife live in Perth and provided isolated accommodation during their stay, both before and after the transplant. Their help allowed Raife to enter the transplant infection-free, and the process was significantly different from what they experienced with Jasper. Not only were they now at the new and updated Perth Children’s Hospital, but organizations like Hunter’s Hero’s provided meals and support throughout the journey. Despite some hiccups (the first two donors fell through leading into the transplant), they experienced a much more controlled and smooth transition from a fragile baby to a robust little boy.
The most challenging aspect this time around has been the loss of time as a family. Due to Raife’s fragility, the need to keep him infection-free, and the distance between them, he did not meet his siblings until he was five months old. They missed the bonding time, and the mother had to mourn the fact that she was the only one who knew him as a newborn and would be the only one to remember him so small and sweet.
As they sit today, they are possibly two to three weeks away from heading home and starting life as a family of five, finally in their own space and getting back to life as their new normal.