Excited to become parents, Brooke and her husband Kory were blissfully unaware that their daughter, Ivy-Mai, would be born with complications and need surgery right after birth. “We lost our first baby at 12 weeks into the pregnancy. When they told me Ivy needed surgery, I said, “I can’t lose another. Whatever you need to do, do it.” said Brooke.
Before Ivy-Mai went into the operating theatre, Brooke and Kory were asked if they would like to say goodbye to their daughter. “I asked them what do you mean?” said Brooke. “I didn’t know if they meant goodbye just for now or forever.”
Being first-time parents on the neonatal intensive care unit, a special hospital unit for babies, Brooke and Kory didn’t know what to expect.
“It really hit us more after week one. The doctor said that this isn’t something where you leave hospital and get on with your lives.”
Ivy-Mai needed 21 surgeries before the age of three because of problems with her oesophagus, causing issues with eating and breathing. Ivy also has kidney disease and bladder issues. To be close to Ivy-Mai during these surgeries, Brooke and Kory were able to spend time at the Ronald McDonald House near Noah’s Ark Children’s Hospital in Cardiff.
Brooke first heard about the Tea with Tŷ Hafan initiative during one of Ivy-Mai’s surgeries while chatting with another parent at Ronald McDonald House. Tea with Tŷ Hafan is a monthly drop-in session at Ronald McDonald House in Cardiff hosted by Tŷ Hafan Family Support Practitioners.
Speaking to a children’s hospice about your child’s future can be scary, so these drop-in sessions give families with children in hospital the opportunity to learn more about Tŷ Hafan’s services and how we may be able to support them over a cup of tea and a biscuit.
Brooke recalled being hesitant to speak to the Tŷ Hafan team at first. “I felt reserved and lingered for a bit outside because I didn’t think Ivy could get the support with her not being end-of-life”.
But Brooke took the plunge and remembers opening up to the team for about two hours about her journey with Ivy-Mai. “They asked me questions and listened to my story. We always say we’re fine. It’s nice to sit with non-family and be listened to, with no sugar-coating.” After this conversation, Brooke applied for support from Tŷ Hafan and was accepted a couple of weeks later.
Since then, Brooke said that without Tŷ Hafan, “I wouldn’t cope. The support has been amazing. They check in with me, not just after surgery but on a normal day to see how we are.”
“I want people to be aware of how amazing Tŷ Hafan is. It isn’t just for end-of-life care. There’s more to it than that.”
Brooke said it’s important that Ivy-Mai’s sister, Willow-Rae, feels involved and supported, too. “Everyone at Tŷ Hafan acknowledges Willow. Even though it’s not happening to her, Willow has to watch Ivy go through it. She’ll be able to get support from Tŷ Hafan when she’s bigger. I want Willow to feel seen too.
“Knowing Ivy has a place to go for end-of-life care has been a huge weight off my shoulders – somewhere she likes to go too. Willow will always have somewhere to go where she had fun with Ivy.”
Thanks to your support, Ivy-Mai and her family have Tŷ Hafan to help them. Thank you for being there for families like Ivy-Mai’s.