Willow

Willow has Dilated Cardiomyopathy and severe heart failure. Her heart works at just 20 percent capacity. Her parents, Chloe and Cole have been told they ‘must wrap their daughter up in cotton wool.’

Willow, who is described as incredible and strong, celebrated her first birthday on April 13 2024. “We are so happy we get to celebrate her first birthday as we can never be sure on the future,” said Chloe. “The hardest thing is we just don’t know, so we need to live life to the full.”

For the family, it has been a tough year and Chloe recalls the moment Willow suffered a cardiac arrest when she was just a tiny three-weeks-old. “Willow had been projectile vomiting, so our GP sent her to Leicester Royal Infirmary,” said Chloe. “Within 20 minutes of us being there, she went into cardiac arrest. I dread to think what would’ve happened if we weren’t in the hospital. We were totally in the right place at the right time and if not, she wouldn’t be here today.”

Medics performed CPR for 50 minutes in total. After 30 minutes Willow regained consciousness for 10 minutes, but then crashed again and had to have CPR for a further 20 minutes. “It felt like 50 years,” said Chloe. “At one point, they said they would try for five more minutes and she came back after three. I am so grateful they gave that extra five minutes.

“No one knew what was going on, we just knew she was very poorly. She had scans and was taken to the Children’s Intensive Care Unit (CICU). We weren’t allowed in, and I didn’t even know if my baby was alive. That wait was the worst time of my life.”

Willow stayed in CICU for eight days. Chloe said: “She then had an MRI to ‘see how much brain damage she had’. Doctors were amazed there was none, after being starved of oxygen for almost an hour. I will never forget that conversation.”

At five-weeks-old, Willow was discharged but Chloe remembers the fear she felt when her baby started projectile vomiting again two days later. Willow ended up back in Cardiac Paediatric Intensive Care and had an operation known as the Hickman procedure – which is where a central line catheter is placed on the right side of the chest wall to enable long-term access to veins. A surgery her parents were told their baby desperately needed, but also told it wasn’t advisable and incredibly risky for heart patients. An impossible decision that Chloe describes as another worst moment.

But being such a little fighter, Willow’s surgery was a success. It was then, while recovering at hospital, that Chloe and Cole met Katie Brant, a Rainbows Nurse.

“Katie told me about Rainbows and explained how the charity could help us. Rainbows was a place that had never crossed my mind,” said Chloe. “We were offered a week of Stepdown Care after leaving hospital and before going home, and that really helped us as I was worried about being on my own with Willow.

“At Rainbows we were able to be a family again. All three of us slept in the same room and that was amazing, it was so nice to be together. It was so nice to not have to be doing everything as well. Our dinners were cooked for us and we could eat together in the Dining Room.

“Since that first stay, we love going to Rainbows. We have to be careful everywhere we go because of germs as Willow is so vulnerable. But at Rainbows, we always know she is safe.

“Willow also loves Rainbows, she is non-stop smiles when she is there. We can’t take her to swim anywhere because temperatures are too cold and will shock her, but the Hydrotherapy Pool at Rainbows is so warm and Willow loves to go swimming.

“We also go to Baby Group, Coffee Mornings and Parent and Carer Group. These all really help me not to feel isolated and it is so nice to have adult conversation with others who understand.”

Willow has eight lots of medication 14 times a day and sleeps a lot. But she is working hard to reach her milestones, despite her heart’s limited capacity. Doctors are amazed at how she is doing and Chloe and Cole continue to be grateful for every day.