The parents of a baby battling a little-known birth defect hope to use their son’s story to raise awareness of the charity that has helped them.
Wyatt Makwana was born on April 18 with a condition called congenital diaphragmatic hernia, or CDH.
The condition occurs in one in every 2,500 babies, which is the same ratio as cystic fibrosis, but the survival rate is just 50 per cent.
Wyatt and his parents Brian Makwana and Sam Orner, from Pinfold Road, Castle Bytham, have spent the last eight weeks flying from hospital to hospital for treatment on machines that help him breathe.
It has been a testing time for the young couple, who are due to get married in September. Brian, 28, works for HSBC in Stamford but has had to take a lot of time off to help his family deal with the situation they are in.
He said: “I had the first four-and-a-half weeks off work. I went back for two weeks but I couldn’t cope with everything that’s going on.
“Sam needs my support at the hospital. Mentally I have found it so difficult.
“You take as much on as you possibly can. But there is a lot you cant do and you find yourself st there staring into nothingness.”
Wyatt and Sam are currently staying at Queen’s Medical Centre in Nottingham. But they have been all over the country from Birmingham to Glasgow for a treatment known as extracorporeal membrane oxygenation, or ECMO.
Wyatt was born with just five per cent of his diaphragm intact. He had to have a large artificial patch stitched to it and has to undergo ECMO treatment regularly to bypass his heart and lungs and allow the organs time to recover.
Doctors have also given Wyatt a tracheostomy, which helps him breathe.
During their time in hospital, the family leaned about the charity CDH UK. Through the charity they have been able to access advice and support, both in person and online.
Brian said: “The charity has given us emotional support. Sam has managed to join some Facebook groups of families going through the same thing as us, and those who have been through it. There are also those who have lost their children.
“The groups have been invaluable for her.
“We also met someone through the groups who had a little boy with CDH. She came to the hospital with him to see us.
“He is now at home after eight months. He still has the tracheostomy and had to have oxygen fitted around his house.
“That has helped Sam massively to understand things. The emotional support has been absolutely fantastic.”
There is still a long way to go for Wyatt, who is also being tested for cystic fibrosis. His parents will have to find a way to pay for all the equipment he needs and doctors are unable to give them a long-term prognosis.
But they are trying to stay strong and hope by promoting the charity they will be able to focus on something positive.
Brian, a former Oakham School pupil, coaches and Market Overton Cricket Club. He has signed up a team of friends to take part in the Rat Race Dirty Weekend at Burghley House in May next year and hopes to raise £10,000 for CDH UK.
If you would like to sponsor him, visit www.mycharitypage.com/Wyatt2014CDH