Heart warrior princess Sophia is nearly three months old but hasn’t yet left Leeds Children’s Hospital.
We spoke to Sophia’s mummy Charlotte about her little heart warrior’s journey so far…
Sophia was born in May 2020
Our journey started on 10th May 2020 – the day Sophia was born.
The amazing midwife suspected something wasn’t quite right when Sophia was born at Airedale Hospital and asked for a second opinion. Sophia ended up in the special care unit having a heart scan and before we knew it, she was being moved to LGI by Embrace.
It was identified straight away that she had a seriously complicated heart problem. We spent the first couple of days of her life thinking she wasn’t going to make it due to how complex her heart condition was.
Sophia was christened at two days old in the neonatal unit. Then we were given some hope.
The amazing Carin Van Doorn and team believed they would be able to do surgery but gave us 50/50 chance of survival due to the complexity of restructuring Sophia’s heart.
Her open heart surgery happened at four days old and was long and terrifying. But Sophia came out of the other side after a few turbulent moments on the way.
Ten days later, due to Sophia having so much fluid on board, she finally had her chest closed. A few days after Sophia had her ventilator and last chest drain removed.
But the following day the ventilator and chest drain went back in.
Sophia after her open heart surgery
“Doing all of this alone due to COVID has made it even harder. Being apart from my son breaks my heart…”
Sophia now had chylothorax and her chest was full of fluid, making it really difficult for her to breathe. Around the same time, we found out Sophia had DiGeorge syndrome which they tested for after realising she didn’t have a thymus in surgery.
For a few days there was a lot of uncertainty as to whether Sophia was going to pull through.
Slowly and with lots of medication her chylothorax seemed to start clearing up and eventually her drain was removed again.
After seven weeks on a ventilator she came off it and finally started feeding again (at 1ml per hour to begin with).
At eight weeks old we finally left intensive care and moved to HDU on Ward L51. This is where Sophia received her lovely Katie Bear from Children’s Heart Surgery Fund.
Sophia is now 11 weeks old. We have moved out of HDU but are still on the ward now. The only thing keeping us here now is her feeding as her reflux is preventing us from being able to move on to bulk feeds.
I think we have learnt slow and steady is the way forward with Sophia. It really has been a rollercoaster of a ride.
Charlotte can’t wait for the whole family to be together
With every step forward it’s felt like we have taken a step backwards but hopefully we are getting there.
Doing all of this alone due to COVID has made it even harder. Being apart from my son breaks my heart but hopefully we will be home as a family soon.
Sophia is the strongest little warrior. All the staff at the LGI have been absolutely incredible. The room at Eckerlsey House has meant I can be near my princess all the time.
We are still going to have a huge journey with Sophia due to DiGeorge but we will deal with it as a family. She will need further heart surgery when she’s older. For now though we just want to make it home so that her big brother can finally give her a cuddle.
“We just want to make it home so that her big brother can finally give her a cuddle.”
I want to say thank you to the midwife and the special care unit at Airedale, the neonatal unit and PICU.
Ward L51 at the LGI – as well as all the surgical team and everyone that has been involved in Sophia’s care at the Leeds Congenital Heart Unit.
Eckersley House where we have been staying while Sophia is on the ward.
And finally Children’s Heart Surgery Fund. Without all of you we wouldn’t be where we are now. You really can work miracles.