In memory of Luka

This story touches on the loss of a child and may be emotionally challenging for some people.

Following bouts of sickness and bleeding during Renee’s pregnancy, a 20-week scan revealed that their unborn baby was extremely small.

Three weeks later, another scan confirmed that baby Luka had intrauterine growth restriction (IUGR)—his umbilical cord was attached to his side instead of the middle and blood flow into the placenta was poor.

Renee underwent checks every second day and to the family’s devastation, they were told that things were not looking good.

At 25-weeks, Luka’s blood flow started to go in reverse and so an emergency C-section soon followed—baby Luka entered the world on 6 January 2023 at only 535 grams.

Less than 24 hours after his birth, they were rushed to the RCH as Luka experienced a spontaneous bowel perforation and required urgent surgery.

“We felt very comfortable at the RCH as our daughter was previously in the Koala ward for six weeks, born with a heart defect. Now she is a happy and healthy four-year-old, so we obviously knew we were in amazing hands,” Renee said.

“Luka underwent surgery at one day old, he was so tiny and delicate. In total, Luka had over 10 surgeries, mostly on his bowel as it was causing most of the trouble. He had stoma surgeries and laser eye surgery for his retinopathy of prematurity.”

“He needed central lines put in often and had scared the nurses and doctors with a few MET calls. He was intubated for a very long time and when we finally got off oxygen, he got sick again.”

In his short life Luka was struck with sepsis three times amongst other infections and recurring tests. It was his last bout of sepsis that sent him from the neonatal intensive care unit to the paediatric intensive care unit in case he needed to go on ECMO, which is a life support device. While he never needed to use the machine, he sadly was never able to recover.

“His lungs were continually collapsing and his sickness caused him to develop pulmonary hypertension and bronchopulmonary dysplasia, his poor little body just could not fight any longer.”

“He recovered from all the other previous surgeries and infections, he was the strongest little baby but after that long of fighting every day, his tiny body couldn’t cope anymore.”

“We made the decision, along with the doctors, to take our perfect baby off of his life supports and let him rest. On 8 June, five months and one day after he was born, Luka took his last breath in our arms. It was calm and quiet and he was finally at peace.”

“Luka taught us so much about ourselves and the people around us. He was a strong little fighter and just kept pushing through till he showed us that it was time to stop.”

“The nurses, doctors and staff at the RCH supported me the entire way through, every single day being my friend, my new family, my psychologist, a shoulder to cry on and mostly, on the worst day of our lives, made us feel comfortable and safe. They took control when we couldn’t function ourselves.”

“I will never ever forget these people who were there for me in the worst time of my life. There was no judgement and they have so much patience for the families who are living in their worst nightmares.”

“To any families in our position, although the NICU is the scariest place you will ever be with your baby, trust the people around you and let them take care of you.”

“You will hear so much information and it’s often too much to fathom but you will be strong because there is no other choice. You have to be resilient because your baby needs you.”

“As for grief and child loss, we are still very fresh out of the hospital so I am open to any advice people have! Talk often, give yourself time.”

“It’s important to have days that spread awareness about pregnancy and infant loss, it’s a way to support families and educate people on something that happens more than anyone thinks.”

15 October is Pregnancy and Infant Loss Remembrance Day. Today is a day to promote greater awareness and support for families whose lives have been impacted by the loss of a child during pregnancy, at birth or in infancy. Families just like Renee’s.

If you or someone you know is struggling with infant loss, there is help available. You can access the Red Nose and Sands 24/7 support line on 1300 308 307.

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