baby

'When my son was born at 25 weeks, doctors asked me to turn off his life support 5 times. I refused.'

In November of 2019 Nicole Dib was 25 weeks pregnant with her second child. She started her day just like any other. She went for a swim at the local pool to ease the common niggles pregnant women often get as they approach their third trimester. But this regular day turned into one of the most harrowing experiences of her life.

After her swim, her waters broke.

Nicole rushed to the hospital where medical professionals monitored her as they prepared for an emergency caesarean birth. She recalls the doctors administering her with magnesium and steroids to help prepare her child's lungs for the outside world. She was scared. She was about to deliver her baby 15 weeks early. Before they could make it to the operating theatre, Nicole was told to push.

Watch: The most common questions about childbirth, answered by mums and non-mums. Post continues after video.

Weighing 838 grams, her son Jibreel entered this world with all odds stacked against him.

In the hours that passed after Jibby's birth, Nicole and her husband, Youssef, were in a state of shock and denial as doctors buzzed around doing their best to keep their son alive. With their son in the NICU, Nicole was approached by doctors who informed them about their choices. "You have the option to not revive, resuscitate him, it's all in your hands," they said.

For a mother still reeling from the shock of a premature birth, these statements were overwhelming to say the least. 

"We were in denial, my husband and I, we just looked at each other, and no words came out of our mouths," Nicole told Mamamia.

Image: Supplied.

After two and a half weeks in NICU little Jibby's organs were starting to fail and doctors continued to offer to turn off his life support. Five times they were asked if they wanted to voluntarily switch off the machine's keeping their little boy alive.

"We basically just begged them to do whatever they can to save our little man."

They were faced with an impossible situation. A situation that no parent should ever have to deal with. Nicole and her husband didn't have the answer. In a moment of pain and despair they called on their family to find support.

"My husband called his father, and he came straight to the hospital. And he looked at us both and he said, 'Look, Is he breathing? Is the boy breathing?' And yeah, we said, 'Yes, he is.' And he said, 'That's it, he's still breathing. Don't give up hope. Just don't give up. You know, it's not in our hands to turn life support off, if God wants to take him, he'll take him'."

From that moment on, Jibby fought. Jibby fought with everything he had to stay in this world.

While in the hospital Jibby had a brain bleed so they knew early on there would be ongoing complications with one side of his body. After a few weeks they received the diagnosis that would become a defining factor in their lives forevermore. Jibby had cerebral palsy.

After five long months in NICU, the Dib family were finally able to take their little boy home and settle into familt life. 

"We've never had the chance to have our little bubble when you have your newborn baby and just enjoy that little bubble. So we really, really really enjoyed it. We kind of just locked ourselves inside. We didn't want any visitors. We just wanted to enjoy that time to ourselves."

Once back at home, Nicole had to figure out the next challenge in their journey with Jibby. Understanding the system and how to access the correct treatment for an infant with cerebral palsy was overwhelming to say the least. 

"That was a really big shock to our system, because we didn't know what to expect," Nicole told Mamamia. "Once we had our first appointment with the Cerebral Palsy Alliance, I thought that was it, we'll just walk out and life would sort of just go on and get back to normal. But they booked in our next six months appointments. And it was a bit of a shock."

While they waited for NDIS approval, they had to continue with treatment for Jibby out of pocket. Thankfully, they had the support of the Cerebral Palsy Alliance who were able to offer funding for expensive therapy appointments as well as providing much needed relief for the entire family who were still coming to terms with the trauma of the past year.

Despite having their world turned upside down, Jibby is now going from strength to strength. After being told he would never walk or talk, Jibby is a keen basketballer and is able to verbally communicate with his loved ones. Thanks to fortnightly physical therapy sessions, speech therapy sessions and a lot of support from his family, Jibby has found his place in the world.

Image: Supplied.

But Nicole wants her story to be heard, she wants people to know that things could have turned out very differently. Looking back on her birth experience, she still understandably feels distressed about the choices she was faced with in those dark hours.

"We were absolutely gutted. And to this day, I'm still gutted," she said. "So my one wish is just to help get out the word, the message and help other families stay positive. And don't give up and don't turn off the life support. Give them a chance."

Everyone's story is unique, but for Nicole, Youssef and their family, advocating for their loved ones is in their blood. Despite all the noise going on around them, they knew that their little boy had more life to live and a bigger story to tell. The road so far hasn't been easy and there will be challenges ahead but Nicole knows that they have the strength to make it through. And they'd do it over a million times again just to know that Jibby is here with them.

World-leading early diagnosis and intervention from the experts at Cerebral Palsy Alliance (CPA) gave Jibreel the best possible outcome. To learn more about CPA's ground-breaking work, visit here.

Image: Supplied.

Feature Image: Supplied.

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Top Comments

mamamia-user-482898552 10 months ago 6 upvotes
May I gently point out that doctors who offer palliative care as an option in dire circumstances are not "giving up" on their patient. Withdrawal of invasive life support in these kinds of situations is a legitimate choice. This family chose differently, and that choice should be respected, but this is not to say that another family in the same situation would be wrong or unloving if they opted for palliative care. This is not a black-and-white area wherein there is only one "correct" or moral choice to make.

Hope_654 10 months ago 5 upvotes
Every NICU journey is different. Every NICU family is different. There should be no judgement as parents make the harrowing decision to continue or stop treatment for their premature or critically ill children. Medical advice and options are critical in these settings and may need to be revisited as the child's health and circumstances change. This article aims to show hope and support for those who continue treatment against the odds of extreme prematurity, and Jibby's story is a beautiful example of hope. However, there is a tone of judgement for those parents who choose to stop and for the medical professionals that do their job in providing parents with their options. Both choices are valid and both should be supported without judgement.