By Julie Morgan

Last updated at 09:40, Friday, 11 May 2012

A BIGRIGG couple are aiming to highlight their daughter’s rare congenital conditions by raising cash for The Sick Children’s Trust.

READY TO ROLL: From left to right: Martin Wood, Brian Payton, Rob Hargreaves, Adam Powe, John Mason, Mark Amor, Julian Cook, Dave Robinson, Keith Ashbridge. Not present, Barry Sullivan.

Adam Powe and Lisa Yardley’s baby daughter, Amaia, was born with disorders which affect her feeding and breathing.

Now Adam and his friends will be cycling 200 miles in one day to raise funds for the charity which helped provide accommodation at Newcastle RVI while Amaia was being treated.

The five-month-old was born with Tracheo-Oesophageal Fistula (TOF), which meant the bottom end of her oesophagus was joined to her trachea and Oesophageal Atresia (OA). This meant her oesophagus was not formed properly and the top part was just a pouch which prevented any food reaching the stomach. She had corrective surgery for both when she was a day old.

She has also been diagnosed with Tracheomalacia which has resulted in her trachea cartilage not properly forming and as such she has to be closely monitored for any breathing difficulties.

When Amaia was born, on December 2 last year by emergency caesarean, her breathing was noisy and she sounded quite mucusy. “The doctor and the midwife came back into the room, Amaia wasn’t with them and my heart sank,’’ Lisa said. “I knew instinctively that something was wrong.’’

Lisa, a locality leader for Adult Social Care, said: “I was irrational, thinking the worst, and at that point I honestly thought we would lose her. I asked people to take photos of the three of us as I was convinced that these would be the only ones we’d ever have.’’ A christening was offered, and quickly held on Special Care at WCH.

“It was a blur. I held her tiny hand through an opening in the incubator as the vicar spoke and I prayed so hard,’’ she said. “The vicar gave us a little pink cross along with the baptism card and I still carry this cross around with me now.’’

Amaia was subsequently transferred to Newcastle RVI. Lisa, due to her own surgery, was unable to travel with her baby. “This was my lowest point and I actually cannot begin to describe how I felt as she left,’’ Lisa said.

Adam travelled with his brother Ross to the RVI, where Amaia had the TOF/OA repaired and had a gastrostomy feeding tube inserted and a chest drain. Lisa followed the next day.

“Seeing Amaia on intensive care, I remember feeling so guilty that I couldn’t just make it better for her like mummies should,’’ Lisa said. “I felt redundant and basically useless.”

The couple praised the nurses and midwives at both the West Cumberland Hospital and the RVI for their “professionalism, kindness and empathy. We will be eternally grateful to them’’.

While Amaia was recovering at Newcastle RVI, initially with Lisa in the maternity unit, Adam was staying at Crawford House run by The Sick Children’s Trust.

He said: “It greatly reduced the stress of being separated from them.

“It was a comfortable and accepting environment where everyone understood what each were going through.’’

Amaia has subsequently been in theatre nine times to have her oesophagus stretched. “It doesn’t get any easier handing her over to theatre staff,’’ Lisa said. “If she’s awake when we have to go, it’s heart-breaking as she looks at us leaving her.’’

Amaia is now feeding without problems, but the couple anticipate some difficulties when she moves on to solids later this month and have an appointment planned at the RVI.

Adam and his friends, all members of VC Cumbria cycling club, will be cycling the “Amaia Rose’’ ride, around the Cumbria boundary, on June 15. They hope to complete in 14 hours. Adam hopes it will be an annual event.

J Edgar and Son is to provide a support vehicle, while the landlord of Adam’s local pub, The Captain’s House, is opening the pub early in the morning to allow the riders to use the facilities. Ainfield Cycle Centre will also provide specialist energy foods.

Amaia is first grandchild for Lisa’s parents, Peter and Terri Yardley, and first granddaughter for Jim and Brenda Powe.

“Amaia is a happy, contented baby and everyone comments on how much she smiles. We are immensely proud of her and feel grateful every day for the expert care she has received,’’ Lisa added.

Anyone wishing to make a donation can do so by visiting www.justgiving.com/AdamPowe or text FBBC69 £5 to 70070.

First published at 11:08, Thursday, 10 May 2012
Published by http://www.whitehavennews.co.uk