The items on the altar at St Thomas the Apostle Church in Kambah including a teddy bear and a rug handmade for the 14-week-old were tragic reminders of a young life lost.

The tiny white coffin was unspeakably sad.

DJ, one of four babies exposed to active tuberculosis at the Canberra Hospital in September, died on December 2.

DJ's parents Kylea Gill and Steven Franco were distraught as they paid tribute to their son. Ms Gill said she and DJ would forever be connected, quoting a poem called The Cord.

''And though you are gone, though you're not here with me, the cord is still there and no one can see.

''It pulls at my heart,'' she said. ''I am bruised, I am sore. But this cord is my lifeline as never before. I am thankful that God connects us this way, a parent and child, death can't take away.''

DJ, who was born 10 weeks premature, was exposed to the tuberculosis while in a humidicrib at Canberra Hospital in September.

He and the other newborns were treated with anti-tuberculosis medication but this was discontinued after ACT Health learnt the drugs were resistant against the strain of tuberculosis.

Ms Gill has previously told The Canberra Times that DJ was ''throwing up for three weeks because of the medication''.

She raised concerns about her son's deteriorating condition with the Canberra Hospital and a specialist but believed ACT Health did not take her seriously, telling her DJ had reflux.

Nine days ago, his condition worsened at home in Calwell and he was pronounced dead at Canberra Hospital after efforts to revive him were not successful.

DJ's grandfather Steve Gill said yesterday the family had been told an autopsy had been completed but they would not be informed of the results for three or four months.

A Facebook page the family has set up, called Help Make Hospitals Listen to Mothers, had almost 1200 members as of yesterday.

For more on this story, see today's Canberra Times.