Cork girl whose image went viral after surgery 'determined' to attend school Christmas play

Five-year-old Sara's image went viral when her dad posted a picture of his "warrior" after an operation in Temple Street Children's Hospital

Sara Higgins is gearing up for her Christmas school play after undergoing surgery at Temple Street Children's Hospital 

It's fair to say that this is a huge week for five-year-old Sara Higgins from County Cork.

It started with major surgery for craniosynostosis at Dublin’s Temple Street hospital, then a gorgeous photograph of her standing on the steps of the hospital went viral, and finally this Friday, she’ll take to the stage for her Christmas show at St Columba’s Girls' School in Douglas where she’s been practicing her rendition of 'Starry Night' for the past few weeks.

Her mother Diane Higgins says Sara is determined not to miss it. 

“She has her Christmas jumper ready and is determined to go,” the mum-of-three explains. “If she has the confidence to do it, I’m happy for her. She’s been through a lot but she’s always smiling. It’s good to be on the other side of the operation. A lot of children like Sara, who have been through the wars often have no interest in staying in bed."

"She wants to get out into the world and make the most of the good times.” 

Sara is no stranger to hospital visits. It’s the second time she’s had this type of surgery which helps bring more volume to her skull so that her brain continues to develop normally. 

Sara last month before her most recent operation.

Born with Muenke’s Syndrome, Sara has other challenges including hearing loss and vision impairment but developmentally her mother says she is 100%. She first had treatment for craniosynostosis with an operation that fits distractors to her head which are slowly turned to make gaps to help new bone grow, when she was just six months old. Sara may need more surgeries like this in the future.

“We didn’t know about Sara’s condition until she was born," says Diane, who runs her own graphic design company, Diane Higgins Designs. 
"And luckily it was immediately apparent, so we were able to get treatment quickly, Time is of the essence in cases like this. On reflection, I felt it was a good thing I didn’t know,” she says. 

“I’m glad I wasn’t stressed during the pregnancy. It was a bit of a shock of course, as Sara is our third child, and the others were routine pregnancies, but CUMH was great and was able to tell straight away what she needed."

Gorgeous

But when Diane’s husband Kevin tweeted a picture of Sara standing on the steps of Temple Street Children’s hospital holding a bunch of brightly coloured balloons, neither of them were prepared for the hundreds of responses that would come their way.

“We were blown away by the traction that the picture received, Diane admits. “But we also felt it was a brilliant opportunity to raise awareness and to use Sara’s plight to encourage people to donate blood. Sara needed one unit of blood when she had her first surgery and then two more recently. It’s so important to ask people to come forward and donate blood whenever they can.” 

Diane‘s brother had sent the balloons to Sara while she was in hospital which gave her a huge boost. But Diane believes there is one main reason why the picture of Sara went viral.

Sara in recovery at Temple Street

“Because she’s gorgeous,” the mum of three smiles. “And because Sara represents hope and positivity. She’s lost her hair during this operation and has been through a lot, but is still smiling as she stands on the steps ready to head home.” 

Now the family hopes that more can be done to raise awareness for the craniofacial department at Temple Street Children’s Hospital too. 

“The department is just fantastic,” Diane says. “But like many other areas in the health service, it’s understaffed and there’s a backlog because of covid. Dr Murray who heads it up is amazing, but he’s the only surgeon there, and compared to other countries that deal with so many cases, the department is under-resourced. We just want Sara’s journey to highlight the importance of supporting this department and all the wonderful staff at Temple Street.

Sara and her mum Diane at the bake sale for Temple Street which raised more than 13k

Sara herself is also rolling up her little sleeves. In the past two years, she’s been a key contributor to the Bake for Temple Street fundraising drive, bringing in a whopping 13k for the hospital. “She absolutely loves baking,” Diane says, “and is even asking Santa for a freezer this year because she just loves to cook and have all her kitchen bits”.

But Diane says there are misconceptions about facial difference. “As a society, we have a way to go to accept those who look different,” she admits. 

“If you think about it, villains in movies are often depicted with scars and a lot of people use makeup to intentionally create scars and artificial facial disfiguration at Halloween to seem ‘scarier’. So there is a lot to do when it comes to ensuring those with facial difference aren’t treated in a way that isolates.”

Delicate

Diane has always maintained that being open and honest with Sara and those who are curious about her condition has worked well for the family. “We had a word with Sara that if anyone asks about her scar or her hair being gone after the surgery, we just tell them the truth —that she had an operation to help her head feel better.

Luckily, we haven’t come across anything ill-intentioned. Sometimes the questions she gets aren’t about the shape of her head, but people might ask about hear hearing aids, for example. We always tell her the same thing — explain that it helps you feel better.

Being open and honest seems to work to satisfy curiosity. Sara has loads of friends at school and has been receiving videos from her classmates. But if anyone ever plays rough, she knows how to explain to them in her own words. 

She says that she has a delicate head. She says she has to mind it.”

For more information on blood donation see @Giveblood_ie 

For more on Craniosynostosis @CranioIreland