“I’ve met so many different children with brain damage or other complex issues. Not one child is the same” - Joanne’s story

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Joanne’s son Evan was born at 29 weeks. Whilst in neonatal care, the doctors found cysts on Evan’s brain, and extensive brain damage. Evan is now nine years old and lives with cerebral palsy and mobility issues. Joanne shares more details about their journey and why she wouldn’t change Evan for the world.

Evan was born by emergency caesarean at 29 weeks, weighing three pounds five, on 13 December 2013 in Broomfield Hospital.

When he was born, the medical staff tried to feed him but that he wasn't taking any of it - he was bringing up green bile.

After three days after we were told that Evan was going to have to be transferred to Addenbrookes in Cambridge and that they might have to operate on him. They didn't really know what was wrong with him, but they seemed to think that he had necrotising enterocolitis (NEC).

I didn’t really know what was happening as I was still recovering from my c-section. Broomfield wanted me to stay there but I wanted to be with Evan, so I got a lift to Cambridge, and managed to get there just in time before my husband was going to meet with the surgeons. By this point they’d done a scan on his bowels.

The team wanted him to stay in hospital to build up his strength, so he was kept on the neonatal ward for seven days, until Christmas Eve and his operation.

Despite more bowel scans, the team needed to operate to find out exactly what was going on. It was so stressful because we didn’t even have time to digest it. It was also so busy with everyone else on the ward and I felt like the walls were caving in on us.

My little ten day old baby, who shouldn't have been here for another three months, was going to have major surgery.

I remember going down the corridor with him in his little incubator and he was just screaming his head off. When we got to the operating theatre, he stopped crying, opened one eye and looked at me. It was like he was saying, “Mum, I'm going to be alright.”

Evan was in surgery for about an hour, and then we were told that he had malrotation of the bowel. His appendix was on the wrong side, so they had to remove it and put his bowel back into place.

On Christmas Day, Evan was still in intensive care and coming around from the major surgery. When he was stable, we were transferred back to Broomfield, but still had a long journey ahead of us, and Evan went on to spend three months in hospital.

Before Evan had the surgery, he was breathing fine – he needed a little CPAP, but afterwards he still needed 0.1mls of oxygen and couldn’t cope without it as his sats levels would sink really low. Eventually the doctors said we could take him home on oxygen, which was such a relief!

But just before he was about to be discharged from Broomfield, we were told, “I'm really sorry, but we've done a brain scan, which is routine for discharge. And your baby has cysts on his brain.” We were completely shocked.

Between the time we had left Addenbrookes and got back to Broomfield, Evan’s brain had completely deteriorated and we had no idea why. I kept thinking to myself, “Oh my gosh, my son has brain damage.” All the worst-case scenarios were going round and round in my head.

I blamed myself for not realising something was going on. I thought, “Did I not ask the right questions to get the right help for him? Could I have prevented this?”

Even now I wake up every single day and think, “How could I have stopped that happening to him?”

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Now Evan is nine years-old and it’s been a long time getting to where we are today. He has extensive brain damage, cerebral palsy and mobility issues, so he struggles with fine motor skills. Evan uses a wheelchair - He can't walk, he can't sit, he can't stand. But he can talk and understands everything - we ended up with a really lovely little boy who’s so funny and makes us all laugh.

It's just changed our whole lives completely – he can't do anything for himself, although he does try to feed himself!

He’s been through so much - he had bilateral hips and such tight limbs that his legs were crossing over, so he needed surgery to pin his hips back in place.

He never whinges, never complains. He just gets on with it.

His older sister loves him to bits and she sticks up for him. For her, she knows no different – Evan is her little brother.

When we were in neonatal care with Evan, we really struggled because there was nobody who we could talk to because nobody really understood what we were going through, including the professionals. They were reluctant to give us all the information because they didn't know what was going to happen and they weren't willing to commit to say.

Even with friends and family who had premature babies, their babies seemed to grow and get better, whereas Evan’s journey wasn’t the same. We felt really alone.

Evan goes to a specialist school now – he hated it at first because he has to really know someone before he trusts them, as he has to have everything done for him. He used to scream the place down, but now he absolutely loves it.

For other parents, I'd say: you are not on your own, and take each day as it comes. Don't put pressure on yourself to try and get your child to do everything that they're ‘typically’ supposed to be doing - enjoy your children and accept them for who they are.

I've met so many children now with different types of brain damage or different complex issues and not one child is the same. Don’t be scared to go on the path that we've been on because you'll meet so many amazing people. The children we see every day, at Evan’s school for example, are just incredible.

It might be a tough journey, so stand your ground. I remember when we first got Evan’s blue badge, he was two years old and I did not want to use it, but it’s for Evan, not for me.

I’ve had abuse from people for using our blue badge, and when we've taken him out in his wheelchair for the first time, we had so many people staring at us. But now I don’t even notice.

I wouldn't change Evan for the world, but I do see him struggle - you know, there's nothing for disabled children at the park and he’s forced to watch the other children a lot of the time. We just want him to have as much of a normal childhood as possible.

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