Brian Makwana first spoke to us about his son Wyatt in June 2014.
He and his then-fiancee Sam were tired, emotional and struggling to see what the future held for their baby, who was born with a just five per cent of his diaphragm in tact as a result of a condition called congenital diaphragmatic hernia.
One year on and the couple, who married in October, are now enjoying a life they didn’t know would be possible, at home with their joyful and inquisitive child and able to plan for the future.
The couple, who lived in Castle Bytham before moving to Grantham this year, still have to juggle working full time in the week and caring for Wyatt at weekends. But they are optimistic about their son’s progress and looking ahead in months and years rather than days.
“The first three days after birth we didn’t think we would be sat here with a baby,” said Brian.
“We’re now at the point of considering the future for us as a family. We need to approach nurseries. We wouldn’t have even considered that as a possibility six months ago.
“When he had his tracheostomy fitted we couldn’t plan anything. It’s nice to be able to plan for the future as a family. We’ve still not had a honeymoon yet but to start to think about things like that is great.”
Wyatt spent the first six months of his life in hospitals. He was taken all over the country from Birmingham to Glasgow for a treatment known as extracorporeal membrane oxygenation, or ECMO. He had to have a large artificial patch stitched to his diaphragm, a tracheostomy to help him breathe and a peg in his stomach so he could eat.
But he finally moved home before Christmas and has developed significantly since then.
“Wyatt is doing fantastically well,” said Brian. “He’s come off the ventilator. That’s been for about 10 weeks. He’s breathing on his own. To see that, from where we were 15 to 16 months ago, is amazing.
“We are positive that we can get his tracheostomy out by the end of the summer. We are pushing for it because we really feel he doesn’t need it.
“It’s causing him more of a hindrance now. It has helped him grow and develop massively, but we’re now at a point where it’s causing him more problems.”
Wyatt’s condition still requires round-the-clock care, and the equipment that helped him survive is also a risk.
“We’re still struggling to get him to feed orally,” said Brian. “He’s starting to eat tiny bits of yoghurt, but he gags on anything with lumps. He has one feed during the day and a full overnight feed through his stomach.
“When he has a cold, that affects him a lot more than it would a normal child. Someone still has to monitor him through the night but that’s because he still has his tracheostomy. If he pulls that out it can potentially be life-threatening. We feel that we are now in the best possible position to see whether he can or can’t do something. He is only reviewed at hospital every three to six months.”
And things are tough for Brian and Sam as well as their son. They have carers in their home from Sunday to Thursday, and at weekends have to check regularly on Wyatt at night. The combination of Wyatt’s care and full time work does take its toll on the couple.
Brian said: “We’re fully settled in as a family and we’ve got into a bit of a routine. It’s got a bit harder over the last four to six weeks. Now we have been here for two or three months on our own it’s starting to catch up with us. We’ve tried to rework our care hours to give us a free Sunday. I was really struggling on a Monday morning at work.
“Friday and Saturday night we move Wyatt upstairs and one of us is up every hour. But as a parent you do what you have to do for your child.”
The proud parents can focus on their child’s development as a huge positive amid months of emotion and stress.
Brian said: “That’s the thing we love. He’s gone through it but it doesn’t seem to have affected his personality.”
Sam added: “He’s a really happy little boy that loved doing what little boys do. He’s so close to walking and he’s very inquisitive. He wants to have a look at everything. He seems to have more fun with boxes than with toys.
“He generally loves people. I take him to baby groups every week. He liked the thought of other children. He loves watching them.”
The family are indebted to the charity CDH UK for the help and support it provided during Wyatt’s first few months. They began raising funds as a way to focus after Wyatt was born, and in May Brian and nine friends ran the 20-mile obstacle course known as Rat Race Dirty Weekend at Burghley House.
Brian finished in just under eight hours and was cheered across the finish line by family and friends.
“It was tough,” he said. “I got to the 13-mile point, and Sam, her parents and some friends were there. She said she thought I’d had enough. But I set out to do 20 miles. It’s something that would take me to the absolute limit.”
So far more than £4,500 has been donated. Brian hopes to organise a Twenty20 tournament at his cricket club in Market Overton and may take on another run this year.
He thanked all those who have helped and sponsored him so far.