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Rare birthmark condition diagnosed by experts at Evelina London

Posted on Monday 30th May 2022
Mia and family posing outside Evelina London Children's Hospital

Jon and Sophie with daughters Mia and Isla outside Evelina London.

A family has thanked specialists at Evelina London for saving their daughter’s life, after a rare birthmark was found to be growing in her airways.

In May 2021, Jon and Sophie took daughter Mia to Medway Hospital after noticing she was making a high-pitched wheezing sound when breathing. While undergoing observations, Mia’s breathing became more laboured so our South Thames Retrieval Service were sent to pick her up and provide intensive care whilst traveling to Evelina London Children's Hospital.

Sophie, 32, said: “After the team saw Mia, they took the decision to intubate her and put her on mechanical ventilation to help with her breathing so it would be safe to transfer her to Evelina London. It was so scary. As they didn’t know what was in her airway, the team had to prepare us that she could potentially die.”

Mia was transferred to the paediatric intensive care unit (PICU) at Evelina London Children’s Hospital, and spent seven days on a ventilator. During this time she was operated on to find the cause of her breathing difficulties. Our specialist team found she had a birthmark growing in her airways, preventing her from breathing properly - a rare condition called a subglottic haemangioma.

Mia was immediately started on medication to reduce the size of the birthmark, and after 13 days she was allowed home.

However, she deteriorated a few months later, when our doctors found that the birthmark had not responded fully to the medication and had continued to grow. Ten days later Mia underwent her second surgery, this time to remove a large part of it blocking her airways.

Sophie said: “The operation was about three and a half hours. The wait was excruciating but the procedure was successful and after a few more days in hospital, we were able to take Mia home.”

Since the operation, Mia has gone from strength to strength. “Mia is so much better in herself now,” Sophie said. “She’s just so lovable and is always up for a cuddle. She also loves playing with her big sister Isla.”

Mia is still under the care of our specialists who regularly check on her progress. It is possible for the birthmark to grow again until it naturally shrinks away around the age of 18 months.

To thank the ear, nose and throat team that looked after Mia, Jon and Sophie ran 34 miles from Medway Hospital to Evelina London, raising over £5,000 for Evelina London Children’s Charity. Sophie said: “The second that the team at Evelina London saw Mia, we knew we were in safe hands. They gave me so much support and care at a time when I needed it most. Without them, Mia could have died.”

Dad Jon added: “The ear, nose and throat team who care for Mia are superb and have gone above and beyond on so many occasions and we’ll be forever grateful for everything they’ve done for us, I can’t thank them enough for everything they have done for us.”

Consultant ear, nose and throat surgeon Dr Victoria Possamai said: “I'm very heartened to see Mia thriving following her challenging start in life. It continues to be a privilege to look after her in partnership with her parents. I’d like say a huge thank you to them both, and to everyone who took part in their run, for fundraising for Evelina London.”

To support their fundraising efforts in aid of Evelina London Children's Charity, you can visit JustGiving.