Local parents who were told their premature baby was unlikely to ever walk or talk have shared the remarkable story of their flourishing daughter eight years later – and are now dedicating their lives to helping other families with premature babies.
In honour of World Prematurity Day, Phillippa and Aaron Reeks, of Caldicot, have spoken about their miracle daughter, Darcy, who spent 11 days on the Neonatal Intensive Care Unit (NICU) back in 2017 after she was born six weeks early and suffered a number of complications from birth.
Following a complex pregnancy and traumatic birth for Phillippa due to health conditions, Darcy arrived at 34 weeks gestation, although it’s believed that she had stopped growing at 32 weeks. Arriving via semi-planned c-section at the Royal Gwent Hospital, Darcy had to be resuscitated at birth for six minutes and suffered a neonatal stroke, meaning she lost all use of her left side and was sent to the NICU. Meanwhile, Phillippa had to be admitted to the Intensive Care Unit (ICU), which meant she couldn’t meet her newborn daughter for 8 hours because she was too poorly.
Husband, Aaron, along with their then-10-year-old son, Dylan, spent the subsequent weeks travelling daily to the hospital to visit both girls.
Aaron said: “We knew it was likely that both of them would end up in ICU, so I went to be with the baby as we’d planned, but it was incredibly challenging. There was massive guilt from my perspective that I spent time with the baby before Phillippa had even met her. Looking back now, I don’t really know how we got through it.”
“It was a constant battle between her health and mine.” Said Phillippa. “It was all extremely traumatic; I couldn’t hold the baby for 3 days.
“The whole NICU experience is a massive rollercoaster – it’s a unit you don’t even know exists until you need it and then suddenly you’re in this whole new world. The staff are incredibly good, but they can’t shield you from everything going on. All you want to do is hold your baby and make sure they’re ok.”
Though both mum and baby were finally well enough to return home, Darcy sadly experienced further complications, requiring an operation at just six weeks old.
Phillippa said: “We were told she might not make it through the operation, as she was only 6lbs at 6 weeks old – she was the smallest baby they’d ever operated on. Thankfully, the operation was successful. She now has a moon shaped scar on her stomach.
“Her prognosis was always really poor at her Neonatal appointments. Because she was resuscitated for 6 minutes at birth, that was on the cusp of causing brain damage. We were told she wouldn’t walk or talk. She didn’t walk until she was 22 months old.”
Having exceeded her doctors’ expectations, Darcy, now eight years old, is completely thriving – walking independently, speaking perfectly, and attending a mainstream school. However, the lasting effects of her birth have left her extremely hypermobile, having been diagnosed with Ehlers Danlos Syndrome (EDS), which is more common in premature babies and has similarities with Cerebral Palsy. For her own safety, Darcy uses a wheelchair when her joints are particularly hypermobile to prevent any dislocations and attends weekly physiotherapy sessions.
“If you knew nothing about her and just saw her in the street, you wouldn’t realise she had any difficulties at all. She is a fighter, she’s a sassy pants.” Said Aaron.
“We’ve always pushed her to know that she’s as normal as anybody else even with her differences – because everyone’s different anyway. Her speech is completely normal – she now tells me off more than I got told off as a kid!”
Phillippa said: “A lot of mums that I speak to say that if you’ve had a NICU baby, they are a different level of sass. Because they’ve always had to fight, they have that built within them. Darcy’s been through so much.”
Phillippa and Aaron had sadly experienced eight losses prior to Darcy’s arrival, which included the late foetal loss of their son, Mason, at 23 weeks 5 days. They have channelled their traumatic experiences into helping other families of premature babies, establishing a safe, supportive community space in the heart of Caldicot, which includes a shop for premature baby clothes, a well-being and soft play area, and a baby bank that provides free supplies to families in need.
Phillippa said: “When Darcy was born, I couldn’t find anything small enough to fit her, so I spent ages altering the smallest dress I could find. From there, I started making clothes for her. I wanted her to look normal, so I wanted to be able to put her in frilly dresses and socks. Because of that, I specialise in affordable premature baby clothes so that everyone has an outfit to bring their babies home in.
“I really like doing stuff for prem babies because you want to celebrate every single possible thing – first bottle, first outfit, first skin to skin. You want your memories to be of the good moments and not of the bad moments. It’s the after-effects that are the hardest.” Said Phillippa.
The baby bank, which has already helped more than 100 families so far by providing free milk, nappies and wipes, relies heavily on donations from local people and is open to anyone in need of a helping hand with baby supplies. Where necessary, Aaron and Phillippa will also refurbish pre-loved donated items to look like new, including prams, cots and moses baskets.
Phillippa said: “We can support people who weren’t prepared for baby coming early and don’t have time to go and get it. We want to help families be prepared. I can get clothes to fit a baby from 1lb in weight, which can be covered by the baby bank.”
Also included in the community space is a well-being station where people can confidentially access milk and essential baby supplies, as well as hygiene packs and period provisions, with no questions asked.
“Everything is done with dignity at the heart. Nobody would know that you were taking one – you could have visited the community space for a number of reasons. If you have had the guts to walk in and ask for help, then you deserve the dignity to do it with no questions asked.” Said Philippa.
Aaron and Phillippa have kept in touch with the NICU team at The Grange University Hospital and have provided donations to the unit there. As part of their dedication to helping families of premature babies, they’re also in the process of establishing a new partnership with a perinatal mental health charity to provide further support to those in need.
World Prematurity Day, on 17th November, is a global movement to raise awareness of premature birth and the sometimes-devastating impact it can have on families.
