NICU volunteers share their stories to support Cwtsh Clos campaign

Sharon Harvey-Lewis knows only too well how stressful it is having a newborn baby on life support.

Her daughter, Grace, had seizures and a stroke while still in the womb, and had to be delivered early.

Pictured above: NICU volunteers Lyndsey Spear and Sharon Harvey-Lewis

Tiny Grace then spent four weeks in Singelton Hospital’s Neonatal Intensive Care Unit (NICU).

Thankfully, thanks in no small part to the work of the unit’s dedicated and talented staff, she pulled through and is now doing fine.

Sharon is so grateful she now volunteers at NICU in order to help other families.

She said: “My daughter is four now. She’s doing absolutely amazing.”

Sharon has decided to share her story to boost Swansea Bay Health Charity’s Cwtsh Clos campaign, which aims to raise £160,000 to refurbish a row of five houses in Singleton Hospital’s grounds that are made available to families of babies in NICU.

Above: Sharon and her partner Kay visit Grace in NICU and Sharon and Grace todau

She said: “My daughter was only around four weeks early, but she’d already had a stroke in my tummy. Luckily, they spotted it when I went in. I was a first-time mum so I didn’t know that something was really wrong. 

“I had an emergency C-section. She was in NICU for a month.”

Sharon explained how such a situation turns your life on its head.

She said: “It wasn’t what you planned. Everything you had planned goes out the window. 

“You have to scrap it and let it go and accept that it’s where you’re at.

“Grace was also an IVF baby. We had been trying to for years and were desperate to have her.

“It was kind of like a whirlwind.

“You go through what I call the fear bubble. You are frightened to get excited. You are frightened to be sad. You are frightened of everything. You just need to be in the moment and hope that they get better minute by minute.”

Today Sharon and her partner, Kay, have nothing but praise for the NICU staff.
Sharon said: “The experience we had in there was phenomenal.

“I personally felt so safe in the neonatal unit and found it really emotional leaving. The whole team there were so supportive.

“They are with you through not only the most difficult time in your life but also when you have those little moments that you cherish as a parent. When they come to see us on the ward round, they always asked us first how we felt Grace was doing. 

“It’s like nothing I had experienced before when going to hospital or a doctor’s appointment. It’s just really inclusive and we felt so comfortable asking anything.

“As a family, you definitely come first. It’s amazing and empowering to know that you are a part of making decisions for your child right from the start.

“I feel as though I owe my life to the NICU staff.”

The experience has led her to volunteer as a peer group supporter for other parents and families.

She said: “That’s why I came back and volunteered, because everything they did, not only for Grace, but us as a family. I felt like I wanted to give back in any way I could.

“We have seven peer supporters, and we go and sit with the parents in the neonatal unit once a week.

“We can sit there and say, ‘We understand this. We get how overwhelming it can feel but we're here for you and you're not alone'.

“It can be a lot easier to open up to someone when you know they have been through what you are going through.”

Sharon knows that she was fortunate enough to live close to the hospital and is grateful that she didn’t have the added burden of finding accommodation or having to travel each day.

That is why she is supporting the Cwtsh Clos campaign.

She said: “I see parents every week who are so desperately grateful for the accommodation as travelling would be too traumatic for them especially if the baby is particularly unwell and mum may have had a caesarean so is unable to drive. 

“The most important thing for your baby in the neonatal unit is you as a parent being there, speaking to them, reading, singing and having skin to skin. All the normal stuff you would be doing if you were at home with your baby.

“So this accommodation is not only vital for the parents to enable them to get to the neonatal unit quickly but also it’s so important for that little baby to have their parents being there. To hear their voices and feel their touch to help them develop through this really difficult time. 

“We as peer supporters really hope everyone gets behind this fundraiser to help these amazing parents have the accommodation they truly need in this time of uncertainty.”

Another volunteer, Lyndsay Spear of West Cross, Swansea, has also shared her story to support the campaign.

She said: “My daughter was born 10 weeks early in September 2021. We weren’t expecting her to be born. I suddenly became very ill, very quickly. I ended up having to have an emergency caesarean. 

“It was horrendous. I can’t really remember much about being unwell – I was a bit delusional.

“I was taken to theatre to have Thora delivered and they told my husband to prepare for either one or both of us not making it out of theatre alive. Luckily, both of us did.

“I didn’t actually see Thora until much later in the night when they wheeled me on my bed from high dependency to the neonatal unit, just so I could see her.

“It was a bit of a shock. They try to explain to you what they are going to look like, but nothing can prepare you for seeing this tiny, tiny thing. She was the size of a hand. She was 3lb 2oz born but very quickly dropped to 2lb 8oz.

“She was in NICU for 47 days. It was a very stressful time.”

Lyndsey is equally grateful to the NICU staff.

She said: “The support on the ward was brilliant.

“One of the things that really stood out for me was when the doctors did their rounds the first thing they ask the parents is how they think their child is that day.

“It’s very parent focused, because you obviously know them best.”

She agreed that the homes are an absolute lifeline. 

She said: “We were very lucky that we lived close by and could come back and forth 24 hours a day if we needed to.

“While we were there we did meet people who were staying in Cwtsh Clos, who had been transferred from Bridgend and much further afield.

“I know mums and dads both have a role in caring for a new neonatal baby. But mums especially have got to be up every couple of hours expressing milk. They need somewhere they can go back to, to be comfortable, and relax, so they are able to provide that for the baby.

“Just having that home from home environment where you come back from the ward, de-stress, but also be close enough that, if something does happen, you are only a short walk away.

“If you can find any money anywhere, even during this cost of living crisis, just give anything you can. It’s such a vital resource.

"You never know, one day it could end up being you, your son, your daughter, someone who needs that support. You just don’t know what’s around the corner.”

She was motivated to become a NICU volunteer in a bid to help others.

She said: “I decided to volunteer because for me, personally, when I was on the ward as a parent there were times when I would have liked to have been able to speak to someone who had been in my shoes. There were others who I could see would have benefitted from that, especially first-time mums. 

“I thought if I could be there to answer a question that they thought too silly to ask a nurse, then I could be that person.”

Thankfully, Lyndsey’s story also has a happy ending.

She said: “My daughter is doing well. Suddenly she’s turned into this two-year-old who wants to be 22!”

Helen James, matron for neonatal services, said: “As a unit we are so lucky to have amazing peer support volunteers like Sharon and Lyndsey, who give up their own time to support our families on the neonatal unit.

“We have nine volunteers in total. The benefits of peer support on a neonatal unit are huge. 

“They support and encourage parents to talk about their experiences, thoughts and feelings in a safe place. 

“This often has a positive effect on the individual’s mental wellbeing, reducing the feelings of isolation.”

If you would like to give an online donation to Cwtsh Clos, you can do that by clicking here.

To make a donation using your phone, please text 'Donate Swanseabayhealth homes' to 88802.

If you would like to fundraise for us yourself, or hold a fundraising event, please visit our JustGiving page for Cwtsh Clos here, where you will find more information.

You can also visit our Cwtsh Clos webpage for more information about the NICU centre and the fundraising appeal.

Thank you for your support!