Saving Ainul’s life

Ainul at GOSH with parents
Ainul at GOSH with parents

Baby Ainul from Malaysia came to Great Ormond Street Hospital for Children (GOSH) in London for treatment after being born with a teratoma, a congenital tumour of her larynx, that was threatening her life. “We like being at GOSH, it’s like home.” Her parents share, “it’s very comfortable and the staff are very friendly.”  

Ainul was premature at 32 weeks and the teratoma was present at birth. “She was born with a tumour and we were really sad and worried when we first learnt about it. The doctors operated on it when she was ten days old and said it wouldn’t come back, so when it did, we were very sad again” her parents explain.  

After the tumour returned, Ainul’s blood showed alpha-fetoprotein (AFP) markers which meant that the teratoma was now malignant. She underwent two courses of chemotherapy in Malaysia but unfortunately the doctors were unable to help her any further. Her family and doctors looked for further treatment options overseas.  

“Ainul had an unusual presentation of a rare condition from birth. We usually see teratomas in the sacrum but can present in multiple areas of the body including the brain” Dr Mette Jorgensen, Consultant in Paediatric Oncology at GOSH, explains. “I was contacted for a second opinion as an expert in treating teratomas. I took the case to our Base and Skull Surgical Multi-Disciplinary Team meeting.”  

The teratoma was present in Ainul’s mouth, back of her throat and neck and was beginning to erode her skin. Ainul had been given a tracheostomy an hour after she was born and when she arrived at GOSH at nine months old, was unable to breath or eat without support. “Ainul came to us as a very tiny baby, only 2.3 kilos at ten months. We would expect at that age for her to be 8-9 kilos.” When she arrived, she underwent imaging and tests revealed that the chemotherapy had worked and the teratoma, though hadn’t shrunk with treatment, was no longer malignant (normal tumour markers).

The team agreed that surgery would be the best option for Ainul but it was not without its own risks. “Due to the positioning of the teratoma, there was a risk of a stroke, risk of aspiration and bleeding” explains Mr Juling Ong, Consultant Plastic Surgeon at GOSH, and one of the surgical team who operated on Ainul. “We looked at different options to support Ainul should there be extensive bleeding, including having the Intervential Radiology (IR) team on standby. While there were significant risks to the operation, without treatment Ainul would not have survived.” 

Her parents agreed to the operation to excise the teratoma. “Fortunately, there was very little bleeding and after a five-and-a-half-hour operation, we had successfully removed the teratoma” Mr Ong shares. “We split her jawbone to access the teratoma as it was situated right at the back of her throat and down her neck. There are a lot of major nerves and blood vessels in that area and the tumour was involving these structures in the neck. Ainul has recovered well from the operation that took place in June, but still currently needs oxygen support, something that experts believe should soon be resolved.  

There was a large multi-speciality team on board to support Ainul and her family, including the oncology team, surgical team, IR team, Ear, Nose and Throat team, respiratory team, dietitians and speech and language therapists. “We really appreciate everyone at GOSH. Juling Ong, Mette Jorgensen, they all really helped our daughter. They did a great job for her” her parents say. “We would really, really like to thank all of them. A special moment was when one of our nurses learnt Malay to speak to our baby.”  

“She should do well” Dr Ong says. “There are options for future treatment and operations she may need to support a full recovery, but we are hopeful that she will be able to breath and eat food on her own in the future.” Ainul will return home to Malaysia to undergo further support and treatment. 

“We hope she makes a full recovery and she will be able to be a normal baby.” Her parents share their future hopes for their daughter. “We hope that she will play and walk, go to school and get friends.”