From a prenatal diagnosis to multiple life-saving surgeries, this blog shares Sienna’s incredible journey with Hypoplastic right heart syndrome (HRHS) and the care that carried her through.
It also highlights the vital support her family received from Children’s Heart Surgery Fund every step of the way.
Mum Becky, from Sheffield, said:
“We came into this journey when I was around 23 weeks pregnant, when our local hospital found that Sienna’s right side of her heart hadn’t developed properly. She was diagnosed with Hypoplastic right heart syndrome (HRHS).
“We were referred to Fetal Medicine at Leeds, nervous for the journey ahead.
“I delivered Sienna in Leeds which was scary as we’re from Sheffield – I was induced and she was born naturally with a great labour.
“At birth, and after a quick cuddle, Sienna was taken to the neonatal unit. Sienna did extremely well and didn’t require any oxygen when she was born.
“She was fitted a NG tube to support her feeding and was given Prostin.
An NG tube is a small tube that is passed up your baby’s nose and down into the stomach. The tube is used to give milk and or medicine when a baby is unable to take everything they need orally.
‘Prostin’ (alprostadil) is a medication used in neonates with certain congenital heart defects to maintain the patency of the ductus arteriosus, which is often administered via continuous intravenous infusion.
“Sienna then had a BT shunt fitted a few weeks in. The shunt is a small tube put in that delivers blood flow to the lungs. She needed a trip to PICU as Sienna doesn’t do anything easy! This allowed her body to rest and then she then stabilised as she had time to get used to her new circulation.
“A couple of weeks staying on the ward to put weight on and then Sienna came home.
“At seven months old Sienna had her Glenn surgery. After this we had visits to the Cardiac High-Risk Clinic every two weeks. She was discharged on 24th October last year. We now have six-monthly follow ups until Sienna is ready for her Fontan.
The Fontan procedure connects another major vein (inferior vena cava) and the pulmonary artery. This lets oxygen-poor blood from the lower body get oxygen directly from the lungs – usually done between ages three and six.
“These guys are amazing! From our first stay in Leeds, Children’s Heart Surgery Fund were always around – a friendly face and chat. They helped us financially with grants whilst Sienna was in hospital and my partner was off work, as well as giving us a Family accommodation room to stay in. Resources in the parents’ room on the ward were also funded by CHSF.
“Now Sienna is home events like Wear Red Day at nursery and the annual Superhero Walk give her a sense of belonging and raise awareness of her heart condition.”
Wear red in Feb for the thousands of children in our region like Sienna!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085
(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
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