“We will never be able to repay what they have done, and continue to do, for us.”
From a place to stay while son, Arthur, was having surgery, to being able to monitor oxygen levels once they got home, heart mum Jessica recounts all the ways her family have been supported by CHSF…
written by mum Jessica
At our 20-week scan, the sonographer recognised the right side of my baby’s heart to be severely underdeveloped compared to the left side.
We were seen in Fetal medicine at Leeds the following day to which we received Arthur’s diagnosis of hypoplastic right heart syndrome (HRHS).
After many trips to Leeds to meet with the Fetal team, everything was in place ready for Arthur’s delivery.
Over the course of 18 weeks, we educated ourselves on his condition and what could be offered to help him.
From delivery and his first procedure at two days old through to open heart surgery at six months old, Children’s Heart Surgery Fund provided us with somewhere to stay to be near Arthur.
Having this accommodation, meant we didn’t have to travel back and forth to Rotherham and allowed us to be near our little boy whilst he underwent his operations.
Two weeks after Arthur was born, we were allowed to fetch him home and monitor his oxygen saturations with a monitor provided and funded by Children’s Heart Surgery Fund.
Without this monitor, we would’ve never known if Arthur was struggling and how his heart was coping.
CHSF also provided us with a care pack for both stays in hospital and after his open heart surgery, he received a Katie bear, medal and certificate for his bravery – of which we will very much cherish forever.
Children’s Heart Surgery Fund continue to support us on Arthur’s journey, as well as the team at Leeds. We will never be able to repay what they have done, and continue to do, for us.
We’ve now enjoyed 14 months with Arthur making memories together. He enjoys nursery very much and in a few short weeks he will become a big brother!
Thank you for all you do. Both the team at Leeds, especially Dr Jamie Bentham and Mr Osama Jaber and Children’s Heart Surgery Fund. You are real life angels.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
Bonnie
Bonnie is two years old and was born with Atrial septal defect (ASD) and Ventricular septal defect (VSD) which were surgically repaired in Leeds at age 4 months. She has just celebrated her second heart day on 4th May! Mum Charleigh tells us about Bonnie's CHD journey...
Heart dad, grandad and uncle ride 150 miles inspired by Isabel
Featured in: Derbyshire Times, Worksop Guardian A Derbyshire dad saddled up for a long bike ride to the coast over the weekend to add to the thousands his family have raised for a charity which supported them when his daughter was critically ill as a baby. Hospitality...
Aria’s Story
8-year-old Aria was born with serious congenital heart conditions - coarctation of the aorta and aortic stenosis. She required open heart surgery at just 3 days old but it had to be delayed as she developed sepsis. Mum Jodie picks up the story, including their...