The McCombe family were just settling in at home as a new family of four when the midwife noticed something wasn’t quite right with baby Freya.
Freya’s mum, Holly, tells us about their journey with congenital heart disease so far and how Freya and her family have been helped by CHSF…
Freya after open heart surgery at 10 days old.
Heart mum Holly says…
Freya was born on 02.02.2020, and we could not have been happier to have completed our family with a little girl to join her almost two year old brother Finley.
We were discharged home from hospital the following day and were settling into family life at home as a four.
When the midwife came to do her first checks the following day, we noticed Freya was jaundiced so we were sent into our local hospital in Doncaster for some blood tests.
It was only then, when a routine set of observations were taken, that we realised that Freya was actually quite unwell. Her oxygen levels were very low at 82% and wouldn’t rise to acceptable levels even with high levels of oxygen.
After numerous examinations and consultations, we were transferred in the early hours of the morning to the Leeds Congenital Heart Unit at Leeds Children’s Hospital by the embrace team.
On arrival, Freya had an echo scan, and it was then that she was diagnosed with Total Anomalous Pulmonary Venous Drainage (TAPVD). We were informed Freya would need open heart surgery and she was cared for between PICU and Ward L51 until her surgery took place at only 10 days old.
She recovered amazingly well following her surgery. She was off the ventilator only six hours after her operation and was stepped down from PICU to HDU the next day. Just four days following surgery we were discharged home.
“…we had so much support from Children’s Heart Surgery Fund to help us through some really tough days.”
As Freya’s congenital defect was not discovered until after birth, her diagnosis came as such a shock to us. We had to leave her brother Finley for over two weeks, and we had so much support from Children’s Heart Surgery Fund to help us through some really tough days. From little things such as coffee vouchers and toiletries to larger things such as helping us secure accommodation during our stay.
Freya shouldn’t need to have any more surgery, as long as her grafts grow with her. She is now just requiring a yearly echo for monitoring her condition.
We will forever be grateful to the staff at Leeds and CHSF – they will always be a part of our life. We now fundraise yearly and cannot wait to take part in the family activities as Freya grows.
Words cannot explain how proud we are of our little heart warrior.
Freya the morning before her second birthday, because of you!
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 families tells us your story will help other patients and families dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF. Share your story here.
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.
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