Brand new and really well looked after!

"Levi is living proof of the power of love, hope and sheer determination." Luanne Thompson.

Today, the anticipation of teaching his son Levi to ride a Pee Wee 50—when he is much bigger and stronger—is no longer just a whimsical wish, secretly held by a first-time father-to-be.

At just 18 weeks pregnant, Levi Thompson’s parents, Luanne and Nick, made a decision that their little boy would be given every possible chance of life. Diagnosed with a complex diaphragmatic hernia that had impacted the development of his diaphragm his liver, spleen, stomach, large and small bowel, and lungs, which meant he had just a heartbeat of a chance of surviving, Levi is living proof of the power of love, hope and sheer determination.

"It was a very difficult pregnancy and emotionally really hard Luanne explains.

"We decided to name Levi, decorate his nursery, stay extremely positive during the pregnancy and never ever give up. We knew there would be complications but we just wanted to give him every chance.

"We wanted to be prepared and well informed, so we toured the Grace Centre and met the team that would, we hoped, get to care for Levi after his delivery. We watched the Grace video and were enormously encouraged to hear of the high success rate of babies treated in Grace. Although it was a little upsetting seeing babies attached to highly complex equipment, the visit helped prepare us for what might be ahead," Luanne said.

Born at Westmead Hospital, Levi’s move to Grace was heart-wrenchingly delayed as it took two weeks for his breathing to stabilise to allow for safe transfer.

With only a small window of opportunity in which to perform vital life-saving surgery Luanne said her little miracle boy put up an incredible fight.

"He surprised everyone by breathing on his own for just long enough to get him moved to Grace," she said.   

The 48 hours after Levi’s surgery were nail-bitingly stressful for his parents and his health care team, but in keeping with the reputation this little miracle man was starting to build for himself, Levi pulled through. He spent the next three months in the Grace Centre where Luanne says he was treated by the most amazing doctors and nurses.

"For every two steps forward, there were three steps back, but incredibly against the odds Levi kept surprising us, so we set another positive goal – this one to be home for Christmas," she said.

Although Nick had to return to work six weeks into Levi’s admission, Luanne can’t speak highly enough of how well-supported the staff made her feel. The excellent care continuously received during Levi’s four-and-a-half month admission to Grace she says was truly amazing.

"I was so appreciative of their expertise, compassion and empathy. The easily understood information shared regularly at ‘rounds’, the expert advice and guidance that was always provided so calmly and patiently – even when faced with making some really tough decisions – was amazing. I can’t praise them enough – they’re all miracle workers," Luanne said.

Miraculously, Levi was discharged in time to be home for Christmas. "The Grace team worked tirelessly to help prepare us with the life skills necessary to confidently care for him at home. The discharge planning was wonderful and equipped us well to mange all Levi’s equipment, feeding tubes and medication needs and taught us essential resuscitation skills, just in case.

"We can’t repay the Grace Team for the care given to Levi but we had a little bit of fun with a Pee Wee 50 sticker that helped raise $2,800 for Grace. Our friends, family and colleagues bought the stickers and helped ‘spread the word’ far and wide via cars, boats, caravans (and a helicopter) – even as far as Germany – about the amazing work of the Grace Centre. The donation raised is a token of our appreciation and symbolises the bond our family will have with Grace forever," Luanne said.

Today they’re home and enjoying each others’ company. Despite a myriad of toys for him to play with, Levi seems to prefer just watching his mum – but as Luanne says … no prizes for guessing where he picked that up from!

Although Levi initially struggled with sleep, the introduction of high flow humidified oxygen has helped, and his lung development will continue to be followed up in the Surgical Lung Clinic at The Children’s Hospital. Levi will remain under the care of Dominic and the Respiratory Medicine team for some time yet. Luanne speaks glowingly of their expertise, guidance and care and their remarkable ability to predict Levi’s responses – ‘they know him all too well’ – and tailor the best treatment accordingly. Luanne has confidently continued to work through the difficulty Levi had transitioning from nasogastric tube feeding to oral feeds and, under the care of speech pathologist Jane, his feeding has improved – as has his weight gain – and will continue to improve with regular review at our Feeding Clinic. Levi was also born with moderate hip dysplasia and following the fitting of a special harness is showing improvement. He will require regular hip assessments to check on progress. 

Editor's note: Like all Grace Graduates who have undergone major surgery, Levi will be enrolled in the Grace Developmental clinic. The multidisciplinary team in this clinic closely monitor and assess the development of our babies, providing advice and allowing the opportunity for referral to early intervention services should a need be identified.