Can you help equip special room ready for little baby Harlow's return to Corby?

Harlow was born with a brain disorder and her parents would like to equip her room
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The family of a young Corby couple who are waiting to bring their 13-week-old baby daughter home from hospital has launched an appeal to equip her new bedroom.

Connor Scott and Jadzia McGivern welcomed their daughter Harlow into the world at Kettering General Hospital (KGH) on the afternoon of June 5 this year.

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Weighing just over six pounds, Harlow was whisked immediately to the Special Care Baby Unit and, apart from two days at home, she has spent every day of her life in hospital.

After an MRI scan, Harlow was diagnosed with polymicrogyria, a brain condition affecting its structure - some parts of her brain have too many folds while other parts are flatter.

Jadzia, 21, said: "It was a normal birth. She was put on me to cut her cord but she was blue. She was taken straight away.

"We expected to take her home but she spent four weeks in Special Care Baby Unit."

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After spending one night together as a new family in the hospital, Connor and Jadzia had to take it in turns to visit baby Harlow as Covid-19 restrictions meant they were not allowed to visit together.

Baby HarlowBaby Harlow
Baby Harlow

The couple were also looking after Harlow's sister, 18-month old Ayse who had to stay with family in Corby.

Harlow has also been diagnosed with micrognathia - a small lower jaw - which makes it difficult for her to feed and breathe.

Mum-of-two Jadzia said: "Normally you would find out in the [antenatal] scans but they never saw anything wrong.

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"The pregnancy was exactly the same as my other one, apart from I felt more sick."

Jadzia and Connor have to visit Harlow separately due to Covid restrictionsJadzia and Connor have to visit Harlow separately due to Covid restrictions
Jadzia and Connor have to visit Harlow separately due to Covid restrictions

Harlow has undergone assessments at KGH and at hospitals in Cambridge and Leicester which was difficult for the couple coping with the travel times and costs.

Connor, 21, lost his job at a Corby logistics hub after the downturn during lockdown and Jadzia, was hoping to return to work in the hospitality industry after maternity leave.

Harlow had been allowed home after both parents had been trained to tube feed her, suction her airway and give her medicine, but after only two days she started bringing up her feeds and returned to hospital.

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Harlow's problem with her vocal cords means they don’t close properly when feeding, making her oxygen levels drop.

Harlow has only spent two days at homeHarlow has only spent two days at home
Harlow has only spent two days at home

She has more chance of swallowing her tongue as it sits further back in her throat, so she needs to be laid on her sides and not on her back.

Jadzia said: "She's been smiling at us - we thought it might be wind but it's definitely smiles. They thought she wouldn't be able to sit up or move her legs but she kicks her legs like crazy.

"She could live for years or she might live one year. She's not going to have the best of a life. With Harlow's condition she's going to need 24-hour care.

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"We want her home but we've got to wait and see. We're not raising our hopes. We'd love her to be home but she's just not well enough."

The family recently moved into a new rented house on Corby's Prior's Hall estate and they are looking forward to being reunited.

Jadzia said: "We're getting her room ready with sensory equipment to help her brain. We've got a bubble machine and we would like lots of lights to put in her room.

Connor with HarlowConnor with Harlow
Connor with Harlow

"Ayse always looks into her crib at home and says 'Where's Harlow'? She doesn't understand that she's not well."

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The parents keep in touch via video calls when they are able to visit Harlow - she is currently in hospital in Leicester.

Still only weighing just under nine pounds, Harlow has one tube that allows food to be given straight into her intestines and another for medicine straight into her stomach.

She may need a tracheotomy to allow her to breathe more easily.

Jadzia said: "I wanted to be a proper mum to her. I can't stay with her. I just want her home."

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Connor's dad, John Scott has started a Go Fund Me appeal to raise as much money as possible to kit out Harlow's room with therapeutic sensory equipment ready for her return home. The appeal total is currently just over £1,300.

Jadzia said: "Thank you so much to everyone that has donated and still donating to help our baby Harlow. We just can't wait to get our baby home.

"We honestly can't thank everyone enough for helping us with everything."

To donate to the appeal click here. Message from the editor: Thank you for reading this story on our website. While I have your attention, I also have an important request to make of you.

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