February 25, 2021 12.55 pm This story is over 38 months old

Family fundraiser as Lincoln baby prepares for life-saving heart surgery

“She’s the light of our lives”

A fundraiser has been set up to help the parents of a Lincoln baby who requires life-saving heart surgery.

Gracie Johnson is nine-and-a-half months old. When her mother Paige Jackson was 25 weeks pregnant she found out that her daughter has Tetralogy of Fallot, which is four congenital heart defects.

Gracie was born five weeks early on May 5 last year and had to spend three weeks in ICU at Nottingham City Hospital as she needed more specialist care.

Gracie has spent a lot of time in hospital since she was born in May 2020.

Her mother was by her bedside, but her father Mitchell Johnson was only allowed to stay at the hospital for around a week due to the coronavirus restrictions.

She was finally allowed home after four weeks, but her condition started to deteriorate and she was very unsettled.

Gracie has been under the care of Glenfield Hospital in Leicester, but at one point when Paige couldn’t get through to them in June last year, she phoned 111 and an ambulance was sent for Gracie.

She had to be put straight onto oxygen and put on the highest dose allowed because her levels were so low. She was admitted to hospital.

Gracie with her mum Paige Jackson (left) and her dad Mitchell Johnson (right).

Gracie was put on a life saving drug to help her heart while the hospital team decided on the best course of action.

A stent procedure was carried out and she was in intensive care for another three days before being put onto a ward.

Gracie Johnson needs major heart surgery.

Gracie had a few complications, including an absent pulse in her leg, and needed a blood transfusion from her mum, as well as being put on a ventilator for 48 hours. She stayed on the ward at Glenfield for two-and-a-half weeks.

She is on a lot of medication and her parents have been given basic life support training and carry out home monitoring that needs chartered daily.

Paige, 24, is a self-employed hairdresser and has been unable to work due to the coronavirus pandemic and caring for Gracie. Her father Mitchell is a self-employed dryliner, which is supporting the family but they are worried about future costs.

Paige’s cousin Becca Jackson set up a GoFundMe page to raise money for the family if accommodation is needed in Birmingham whilst Gracie is in hospital and to help maintain home life ready for Gracie’s return.

Over £1,400 has so far been raised – click here to make a donation.

Gracie with her parents Paige Jackson and Mitchell Johnson.

The family went back to Glenfield Hospital on February 24 for an ECHO scan, ECG and consultation. The cardiologist was worried about Gracie as her pulmonary artery is blocked and she kept going blue.

Birmingham’s Children Hospital were contacted to try and push the 12-hour operation forward and Paige told The Lincolnite: “We should find out a date for the operation on Friday for sometime in the next week or so.

“I have to keep checking her oxygen levels throughout the day, which I have been shown how to do, and we have open access at the local hospital in Lincoln who can support her when needed and transfer her to Birmingham if her condition gets worse.

“I want to say a massive thank you (to the staff at Glenfield Hospital and other hospitals) for trying to save our daughter. We can’t thank them enough as without them she wouldn’t be here.

“They are unbelievable and go above and beyond, they are so family orientated and care for us and not just her.

“I am happy that she is getting sorted, but am nervous and feel very anxious. She is the light of our lives she’s amazing.”

Gracie’s mother said “she is the light of our lives”.

Becca told The Lincolnite: “Paige and Mitch have been amazing since the moment Gracie got her diagnosis. The strength and courage they have shown at every obstacle has been nothing short of inspirational.

“Gracie is such an amazing and brave little girl, and if this gives her mum and dad one less thing to worry about at such a difficult time then it’s done its job.

“We are behind them all the way and I’m truly overwhelmed at the kindness and generosity people have shown so far, at what is a difficult time for everybody.”