Little Teddy Brimble-Coupe's smile never fails to shine through on photos - even though he has faced a tough medical battle since birth. Born on November 20, 2021, he has spent much of his short life in hospital.
Despite his brilliant care, his father, Jamie Brimble, of Mansfield Woodhouse, says they have been waiting weeks for him to be transferred to Great Ormond Street Hospital for Children in London for "high risk" surgery to fix his lungs and his heart.
After birth, Teddy now aged 16 months, could not drink from a baby bottle, as he did not know how to suck, and he was fed from a cup. Doctors decided to help him and inserted a tube up his nose and into his tummy.
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Teddy was trying to drink - but his heart conditions made the work of breathing too much, and he was burning too many calories. This meant, at just four days old he was fed milk via the tube.
He had extra checks and heart monitoring done and went home. He lives with his mum and carer, Adele Coupe, 23, of Kirkby-in-Ashfield, and dad and her partner, Jamie, lives closeby in Mansfield Woodhouse.
After a few days at home, Teddy started going really down hill. He underwent open heart surgery at three weeks old. By December of 2021, he had banding around his pulmonary artery to stop allowing so much blood to flow to his lungs.
He had a very hard recovery after his surgery. Then he got something called enterovirus, which is basically just a cold, but he was in hospital recovering for a month after his surgery, and even spent Christmas there.
He finally went home on New Year’s Eve. He was in and out of hospital, regularly staying for a few nights at a time, sometimes a few weeks at a time, because of his work of breathing, low oxygen, catching different viruses and finding it very hard to recover.
He was assessed for his swallow as the SALT (Speech And Language Therapy) team, who said he had an "unsafe swallow", so he couldn’t be weaned on to baby food and, with just having special baby milk, he wasn’t gaining the weight that he was supposed to be gaining.
In a post, written by his dad, 26, but in his son's words, it reads: "I was very hungry and wanting to eat, and my mum and dad worked with me, and slowly but surely I was making very good progress with different foods and textures.
"We are currently still working towards the food and different textures etc. but I am doing very well. I have still currently got the NG tube, but now I am doing very well with my eating and only have to have one feed on a night time, and I’m working towards eating three meals a day.
"We also have worked towards trying to manage my breathing whilst drinking liquid and I am also doing very well with this.
"We are now on the 07/03/2023 and I had to go for a camera down my throat because previously the hospital had to do a CT scan, and had seen that one of my airways looked “floppy”. To allow this to take place I had to have a special anaesthetist to put me to sleep as I have very rare heart conditions.
"They did the camera down the throat and found that my main airway is “narrow” and my left airway is fully closed - but when they push the camera through it opens up on the other side. They kept me in and put me on something called a CPAP, which normalises breathing by delivering pressurised air and gives me a break when I sleep at night-time.
"All the doctors have spoken and said they have never seen anything like this before and the only doctor to have seen this in the UK is at Great Ormond Street Hospital. I am currently in Leicester's Children’s Hospital (based at Leicester Royal Infirmary) at the moment waiting to be transferred to Great Ormond Street for surgery to fix my lungs and my heart.
"The surgery I am waiting for is very high risk. So I am trying to raise money for my family to help to support me while they are with me in hospital and to be able to afford fuel to be able to see my three-year old-sister and family and for food whilst in hospital".
Mr Brimble has set up a gofundme page about his son and to raise £1,000.
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