Shining a light on Valentine's rare condition

13 March 2023

Valentine and his parents

Expected time to read: 3-4 minutes

Baby Valentine survived a life-threatening abnormality thanks to a cutting-edge procedure – and a generous gift to Sydney Children’s Hospitals Foundation that helped make it possible. 

Like any first-time mum, Lourdes was thrilled to welcome her baby boy into the world. But joy soon turned to worry when little Valentine started making unusual breathing sounds.  

Lourdes was still recovering from birth at her local hospital when Valentine had to be rushed to Sydney Children’s Hospital, Randwick (SCH) by a Newborn and paediatric Transport Emergency Service (NETS) ambulance for urgent, life-saving surgery. 

Described as a mobile Intensive Care Unit for children up to the age of 16, the wonderful staff at NETS made sure Lourdes was updated every step of the way.  

 

Valentine in hospital

Valentine had been born with a rare condition called a tracheoesophageal fistula (TOF). Affecting just one in 4500 kids, TOF occurs when a child’s windpipe is connected to their food pipe. This causes air from the windpipe to enter the stomach and fluid from the stomach to enter the lungs, which in turn can cause severe breathing problems. 

While she waited anxiously for her newborn son to undergo a complex, six-hour procedure, Lourdes started researching TOF. 

“I kept seeing these confronting images of children with large incisions down their neck and chests,” she remembers. “I worried Valentine would be left with a huge scar for the rest of his life and this was the start of long-term health problems.” 

Thankfully, Valentine was able to have minimally invasive ‘keyhole’ surgery to correct his condition – made possible by a generous gift from a Sydney Children’s Hospitals Foundation (SCHF) supporter.  

Doctors operated through three small incisions under Valentine’s armpit. The cutting-edge technology that allowed this procedure was part of the hospital’s new ‘Smart Operating Theatre’, funded through a compassionate donation to SCHF. 

The Smart Theatre upgrade included installation of 4K, high-definition imaging, which provides sharper resolution, clearer images and far greater surgical precision. This extraordinary technology means that when surgeons are performing complex and life-saving operations on tiny patients like Valentine, they have all the tools they need to provide world-class treatment.  

By allowing less-invasive procedures, the Smart Operating Theatre reduces recovery times, lowers infection rates, lessens pain and scarring and shortens hospital stays for kids.  

After his procedure, Valentine was transferred to the NICU  for recovery and monitoring. Doctors were pleased with the results of the procedure, when he started drinking breast milk from a syringe after just three days. By day eight he was breastfeeding without any issues. By day 12 he was ready to go home. Lourdes was both relieved and excited. 

Valentine and his mum Lourdes

Today, she says Valentine is a “healthy, vibrant, cheeky and affectionate” little boy who is obsessed with cars and is rarely seen without his pink toy hippo.  

Lourdes could not be more grateful to the medical team who operated on Valentine, and the wonderful SCHF supporters who helped make his treatment possible through their generous gift. 

To help other families in their time of need, Valentine's family donated to SCHF in lieu of a gift at his baptism and first birthday. 

A welcome card at Valentine's birthday party
Valentine and his parents at his 1st birthday party

“In other countries, complex conditions like TOF and their corrective surgeries can have a impact on families – physically, mentally and financially,” she explains. 

“We’re so lucky to have access to this type of cutting-edge surgery in Australia. I want to help other families receive the same extraordinary care that Valentine has.” 

To make a donation and help give children with rare conditions, like Valentine access to the very best treatment and care, donate today. 

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