Baby Lillie: Parents Turned Off Life Support And A Miracle Happened

Baby Lillie Klawinska-Disson is alive today, against all odds.

Her parents, Sky Disson, 23, and her partner, Peter Klawinska, found Lillie in her crib, blue and unresponsive, at 8 a.m. one morning.

“There was no heartbeat, nothing at all. I watched her turn blue in front of my eyes. I assumed my baby had died,” Sky said.

She called for emergency services while Peter, 25, performed CPR on baby Lillie. The paramedics were quick to respond, but even their efforts couldn’t revive baby Lillie, and they resorted to using adrenaline. Sky recalled the agonizing moments that she watched medics try to revive her baby.

“It felt like a nightmare and I was waiting to wake up. But I didn’t and it was real.”

Peter added, “My world came crashing down in an instant. I just desperately tried to help her. I was breathing into her but nothing was happening.”

In total, baby Lillie was without oxygen and had no heartbeat for a total of 24 minutes.

Lillie was taken to a special intensive care unit at St. Mary’s Hospital, located in London, England. Scans completed at the hospital showed that Lillie had suffered brain damage because of oxygen deprivation, and the only help doctors could provide was to place the baby on life support and see if she would respond. Medical professionals referred to it as a “near-miss” case of crib death.

Ten days passed, and there was no improvement for baby Lillie. Her mother described the heartbreaking scene.

“She was just lying completely still with her eyes closed and not responding at all. It was as if she was sleeping, forever. It was just horrible to see.”

During that time, Lillie’s dad had her christened, the normally happy family occasion taking place in the stark clinical surroundings of Lillie’s room in the ICU at the hospital.

Then parents Sky and Peter realized they were facing the most difficult choice anyone has to face: Would they continue to keep their beautiful baby on life support, or would they take her off?

“The doctors told us this was how she was going to be for the rest of her life. They suggested it was best to turn off the life support but gave us time to make our decision,” Sky said. “I was determined that when the doctors walked in I was going to say no. But then we decided it was fair to let Lillie make her own mind up.”

It was an impossible choice, but Sky and Peter wanted to do the best they could for baby Lillie.

“The last thing we wanted to do was prolong her suffering.”

So Sky gently dipped her Lillie’s palms into paint and pressed them onto a canvas — she wanted the tiny hand prints as a reminder of her beautiful baby, who was only 6-months-old.

“We were advised to say goodbye so I took prints of her feet and hands. It was very emotional — it felt like I was saying my last goodbye,” Sky says. “When they asked me if I wanted to hold her I just couldn’t do it. I just wasn’t strong enough.”

Baby Lillie’s father took his daughter into his arms and cradled her after she was taken off life support. But as her parents braced themselves for what they believed would be the inevitable passing of Lillie after the last tubes were removed, a miracle happened.

Lillie began to breathe on her own as her parents watched in disbelief.

“It was an incredible moment. She took her first breath. She wasn’t struggling at all and it was an amazing feeling. When she cried for the first time it sounded like a laugh to me.”

It was the very thing the couple had been praying for since the moment they found Lillie, blue and unresponsive, in her crib — but doctors, although amazed, warned them against too much hope.

“They were really pleased for us but kept saying she could go downhill in the next few minutes or days,” said Sky. “So every time she breathed I was on tenterhooks wondering if I was witnessing her last breath. Me and Peter were going crazy watching the machines which showed her oxygen and breathing levels. The nurses decided to turn off the computer display in her room to stop us worrying.”

After three days of unaided breathing, Lillie was moved to a hospice. Her doctors were still convinced Lillie needed “end-of-life” treatment. But after just a week at the hospice, Lillie was cleared to go home. Even then, however, the medical professionals still believed baby Lillie wouldn’t make it, and administered palliative care to her for several months until it became more and more evident that Lillie was simply not going to give up.

Baby Lillie is now 14-months-old, and her parents report that she goes from strength to strength.

Her near-death experience, however, has left Lillie with some challenges. She has developmental delays, and despite weekly physical therapy, may never walk. Medical specialists say that baby Lillie’s case is so unique that there is no way to predict how she may progress.

But there is little doubt that Lillie is a fighter.

“Even though we know she may struggle to learn to walk I’m focusing on being positive. She wanted to breathe, to live, that was her decision to carry on fighting and be strong. We’re hoping that can minimize the future effects of the brain damage and help her develop. We have to do everything we can to help her reach her full potential.”

Even with challenges, Lillie’s mom and dad are certain of one important truth: Lillie is a miracle baby, and it’s amazing that she is alive today.

For another story of a miracle baby, click here to read about the little girl who is thriving after parents refused to listen to their doctor’s advice to abort her before she was even born.

[Image via the Peterborough Telegraph]

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