Mum of boy with heart defect says Speech Therapists are helping him to ‘lead a better life

Looking at the smile on the face of three-year-old Nicholas Bastos, no-one would know of the challenges he has overcome to attend nursery.

Infant on a stoll drinking a cup off of juice

Nicholas has left-sided vocal palsy and his family has praised our Speech and Language Therapy Team for helping them to manage his condition so he can attend nursery.

Nicholas Bastos, from Bristol, was born with hypoplastic left heart syndrome – a severe heart defect which means the left side of the heart is underdeveloped and cannot effectively pump blood around his body.

He has had three open heart surgeries to try to improve his condition, but a complication during one of the surgeries left him with left-sided vocal palsy. This means his vocal folds, which should close when he is eating or drinking, are paralysed and leave his air passages and lungs unprotected and at risk of choking.

After he was discharged from hospital in May 2019, Nicholas was referred to the Speech and Language Therapy Team at the Community Children’s Health Partnership (CCHP), which is led by Sirona care & health and partners.

Philippa Hinds, Sirona’s Principal Speech and Language Therapist and Clinical Lead for Dysphagia, has been working with Nicholas and his mum to help them manage his condition.

His mum, Eliamara said: “Nicholas has been with under the Speech and Language Therapy (SLT) Team since he was diagnosed with left-sided vocal palsy because he’s at risk of choking on fluids and solids. Solids can go well if we keep telling him to calm down, but every time he drinks, he’s prone to coughing or can choke easily.

“Philippa is very kind and is helping him to get well without any surgical intervention. She showed me how to stay close to him when I give him a bottle and encourage him to drink calmly. That’s helping a lot. He can now drink from a cup or glass, and he does it slowly most of the time. It’s been going really well.

“She spoke to his nursery and told them how to manage his condition. She teaches him to slow down and understand about his heart. They have helped him to lead a better life.
“I also want to thank the wonderful cardiology and intensive care teams at Bristol Children’s Hospital who have been helping Nicholas since he was born.”

Philippa attended a joint clinic with ear, nose and throat consultants from Bristol Children’s Hospital which enables them to work together to treat patients.
Philippa said: “Nicholas has had quite a number of surgeries and will need some more. He will live with vocal palsy for the rest of his life. There’s a risk that the food or drink he has will get into his airway and if it gets into his lungs, the risk of infection is quite high.

“One of the things I’ve been supporting him with is drinking. With thin fluids, there’s a really high risk of it going down the wrong way. I suggested yoghurt drinks, which are a bit thicker and slower. He also really likes drinking through a straw which slows him down. We try to empower parents.

“Nicholas was referred to us when he was nine-months-old, and he’s now got to the age of three and hasn’t had a chest infection. He’s got a very good cough which protects his air way.
“The children’s hospital suggested a tracheotomy, but by seeing him at home and in the community, I was able to see that he has enough protective mechanisms in place.”

By working closely with the family, Philippa was also able to pick up on his language difficulties, and our therapists are now helping Nicholas with speech sound work.

Mum of boy with heart defect says Speech Therapists are helping him to ‘lead a better life