Tyler's Story

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Tash and Jason are parents to eighteen-month-old Tyler.

At Tyler’s 20-week scan, Tash and Jason were getting excited to find out whether their baby would be a boy or a girl. It was at this point that the scan indicated something was not right.

‘The scan was taking quite a while and I thought it was a bit odd. We were then told that they needed to get baby’s head turned as the nurse could see some swelling.’ It was not long until Tash and Jason were sent to Princess Anne Hospital in Southampton for further tests.'
‘It was really scary. My biggest fear was ‘am I going to lose him?’. He was 20 weeks and I’d already bonded and felt a connection with my baby.’

When they went to the hospital, they were checked over by a series of consultants and eventually told that Tyler had something called lymphatic malformation.

‘The consultant explained Tyler’s condition and how they don’t see a lot of it. Every couple of years maybe. My first words were: “is he going to be okay?”’

Tash explained how after learning of Tyler’s diagnosis, she went home and googled it, and what she found was horrifying. The rest of Tash’s pregnancy was increasingly difficult and stressful, having to have constant scans to monitor Tyler, as well as not knowing exactly how sick he would be at birth.

‘We were told Tyler could end up with a tracheotomy, but they couldn’t know for sure. They also said he could go into neonatal, but again they weren’t sure. When I got to 34 weeks, Tyler was breach and so I was asked to stay in the hospital for two weeks until he was 36 weeks when they would perform a C section.’

At Tyler’s birth, there were 28 people in the room in total and Tash was only allowed to hold him very briefly before he was quickly rushed away to monitor his breathing.

‘I was allowed to hold him for a few seconds before they took him away. He was so gorgeous, he only weighed 5.4 lbs. Then he was taken straight off to neonatal. It was a horrible birth, it’s still traumatic now.’

Tyler remained in hospital for eight months after he was born while he underwent surgeries and treatment to help him breathe better. During this time Tash described how life completely changed.

‘My life is completely different. I’m trying to keep things going in the hospital, while also being there for the other kids. I don’t drive and Jason works so having to get to the hospital every day can be hard. You don’t mean to, but you’re focusing on so much you don’t have time to eat, sleep or do other things.’
‘I’ll always remember coming home from the hospital for the first time without Tyler. I had his little beanie that he had on and I’d sleep with it and put it under my pillow. I just felt so odd coming home without him. Seeing all the mums come out with their baby and he was still in hospital, it was horrible.’

Tash described how this all had a huge impact on her friendships and relationships; and that she shut herself away during this time.

‘I didn’t want to talk to anyone, because all they would say is it’s fine, or they would ask how he was and I just didn’t want to talk to them about it. I’m starting to open up a little, but no one really understands, which is so hard.’

Tash also explained how Tyler’s condition had a serious impact on her own mental health.

'I’ve suffered before with depression, but having Tyler triggered it back. I got myself to a low point and it definitely affected other members of my family because they had to see me go through it. Sometimes you just feel like there’s no ending to it, it all just feels like journey.’

Tash and Jason’s life looks very different now, Tash explains how they are ‘very busy and it can be tiring and worrying at times.’ She describes the worry as ‘constant’ and that ‘you don’t have time to think for yourself’.

Despite all the complications and the way the family’s life has changed, Tash says she

‘Wouldn’t change it for the world. I just couldn’t be without him. Everyday I take him to the mirror and make him look at himself and tell him how beautiful he is.’

In November 2021, Tash and her family were referred to Rainbow Trust by their neonatal councillor, and Family Support Worker Cindy has been supporting the family ever since.

Cindy supports the family by picking up the kids from school and taking them out, she also offers emotional support for Tash and goes with her to mum groups, so she is able to meet other mums with children like Tyler.

‘We’ll go for a coffee and just walk around or she’ll come and spend time with Tyler. It’s great because if my kids can’t talk to me, or I’m busy, they can talk to Cindy. She’s got us tickets to days out like Paulton’s Park, which is lovely because it gives the kids some time away and something for themselves.’
‘Having Cindy has helped me to see that there are people out there to help. It’s so good to be reminded that there are people out there willing to help and who care and that we are not alone. It makes me think to never be scared to ask for help. Because I was, but there is always help out there.’

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Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

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