A Buckingham family are trying to raise funds for their 11-week-old baby Emilia after it was discovered problems with her heart mean she will have to wear a pacemaker for the rest of her life.
When Emilia Holmes was just eight days old her parents Dan and Louise were told that to survive she would need specialist care at Southampton Hospital, two hours from her home in Buckingham.
On arrival she had open heart surgery and a heart bypass to patch the narrowing of her aorta.
She then had a band placed around her pulmonary artery.
To top it all off, while recovering from the surgery Emilia suffered from a collapsed lung.
And the problems began before Emilia was even born, with Louise experiencing a difficult pregnancy, Dan, said: “It’s been horrific from the word go.
“It’s quite a rare condition, and it’s almost like nobody wants to give us the full story.
“Her heart is unable to pump blood properly to her lower body, because of the hole in the ventricle.
“Blood was flooding her heart - going into both chambers - the band was supposed to restrict the blood flow, but it was on too tight which made her worse. “What followed was extremely complicated surgery to fix the band, which took eight hours.”
Dan added: “She’s still in high dependency and Intensive Care and been on the ventilator – we’re just waiting because we found another narrowing, she might have to go back to surgery.
“Two heart bypass is a huge amount of stress for an 11-week-old baby to be placed under, her resolve has been amazing.”
Emilia had to be transfered to Southampton University Hospital from John Radcliffe Hospital after heart operations on children were suspended in 2010 after four babies died within a few months of a new surgeon starting work there.
Louise, is a nurse practitioner who unfortunately started her job too late to qualify for maternity pay. Travelling to and from Southampton while not working has been expensive for the family.
Dan said: “Despite us not working, we’ve still got to keep a house in order.
“Mortgage and bills and travel expenses are adding up for us, it’s been relentless.
“Fundraising was initially Kimberly Deeney’s idea, it’s not something we really thought about.
“Her cousin was in an accident a few years ago and she found it was a huge help in a stressful time,” Dan added.
Emilia has only spent six days out of hospital since she was born, as she was rushed back after turning blue at home.
Dan said: “It’s been a really difficult time. You have good and bad days but we just try and be there for each other and stay strong, to stop us falling to pieces.
“I just want to say thank you to anybody who wants to donate - It will go a long way for us. It’s been quite a lonely time for us at the hospital, you see babies and familes come and go, and we’re still here waiting. It’s horrible.
“The staff here have been amazing, they are under immense pressure and they do a fantastic job.
“I’d like to say thankyou to them too.”
“Louise has been inspirational. She’s a fantastic mother and showing an amazing resolve through this difficult time.”
To donate to the family, who have so far raised just over £500, please visit: https://www.justgiving.com/crowdfunding/kim-deeney