Leon

Before he was even born, Leon’s lung tissue had overgrown, forming a mass in his chest. His prognosis was bleak.

But Leon defied the odds. His mum, Harriet, told us the story of her little boy’s rare condition and how he grew into the happy, healthy five-year-old he is today.

“At Leon’s 20-week scan, everything was looking fine at first. Then, the person doing the scan suddenly excused herself. She said something was wrong and she needed to consult another member of staff.

I was told to come back for a follow-up scan, which was quite alarming. At that point, we had no idea what the issue was. All we’d been told was that some of the baby’s measurements were wrong.

We ended up needing weekly scans. The staff at our local hospital discovered that Leon had a Congenital Pulmonary Airway Malformation (CPAM). A CPAM means that part of his lung didn’t develop properly and grew into a mass of tissue. It’s really rare. I think only one in 10,000 babies is affected by it.

It was a really terrible time, which was compounded by the fact that no one knew what CPAM was. Nobody had heard of it. There was no awareness of Leon’s condition and no support network for parents going through the same thing as me. I felt very disconnected from everybody.

Harriet, Leon’s mum

At about 24 weeks into my pregnancy, our consultant was really negative about Leon’s chances. He told me that my baby almost certainly wasn’t going to survive and asked me if I wanted to terminate.

My partner was strongly against terminating the pregnancy. Leon is an IVF baby, so we’d obviously had quite a journey to get to the point of conception.

I was torn, especially since I was the one carrying this baby who might not make it, but my partner said that we had to give him a chance. So, we made the difficult decision to carry on with the pregnancy.

After 30 weeks, we were transferred to St Michael’s Neonatal Intensive Care Unit (NICU) in Bristol. The NICU team told us that, if Leon survived to full-term, he’d need an operation. He would probably be intubated from the moment he was born.

The NICU staff timed it all as well as possible. I was induced, Leon was born and he went straight to NICU, where there was a bed waiting for him.

To our surprise, Leon responded really well to his treatment. The staff were amazing, and we could call them at any time of day. It was a reassuring place to be during that time.

Cots for Tots provided us with a NICU diary for Leon, which was a place for us to write about him every day he was in intensive care. Given the horrible situation we were in, it really made a difference to write down some positive memories. The nurses would also add to Leon’s NICU diary on their shifts, recording things that he’d done or signs of his growth and development. We’ve still got the diary as a memoir of Leon’s time in NICU.

St Michael’s NICU also offers loads of support with breastfeeding, which meant I could breastfeed Leon. I didn’t have the best experience breastfeeding with my older son, so having a supportive environment really changed things for me.

After his second week in NICU, Leon’s operation went ahead as planned. They successfully removed the mass that had grown on his lung. He spent another week or so in NICU, recovering from his operation. After a month, we were able to go home.

It was surreal. I had to have quite a lot of counselling afterwards. For five months, I had been preparing to watch my baby die. So, I couldn’t believe that I got to leave NICU with Leon just one month after he was born. Suddenly, we had to go through all the normal motions of having a newborn.

Harriet, Leon’s mum

The team followed up with Leon a year later to monitor his progress, and then they officially discharged him.

The only warning the doctor gave us was that Leon might get breathless from doing intense sport. Leon is asthmatic, but that runs in the family anyway. He’s got no health issues as a result of the condition. That’s the weirdest thing. He’s well, and he’s doing well at school.

*^{Leon with his brother JJ, then and now.}*

A few years after he was born, we took Leon back to our local hospital to meet the consultant who told us how poor the prognosis was. We didn’t want to make him feel bad, but we wanted to show him that if there was hope for us, there could also be for other families in our situation. We want other families to have hope because that’s what was really lacking for us.

Leon’s condition was a rare one, and, in their experience, it had never been a positive outcome. We made the decision to continue with the pregnancy in a situation where we felt quite hopeless. Leon is living proof of the fact that it could turn out all right.

Harriet, Leon’s mum

As time went on, I started reflecting on my experience of being in hospital with Leon, and I knew that I wanted to give something back.

In October 2023, I did a skydive to raise money for Cots for Tots. I had done some other fundraising events in the past, like walking events. I thought I should challenge myself to something scary and out of my comfort zone this time to really make an impact and get people to donate.

I jumped from 15,000 feet. It was pretty terrifying, but it was an incredible experience. I would definitely skydive again, and I’d really recommend it to anyone thinking of doing one.

On the day of the jump, my partner drove me, Leon and my older son, JJ, down to the airfield. The boys watched me jump, which was exciting for them. It was lovely that they were a part of it. In the end, I raised £500 for Cots for Tots.

The skydive was a positive way of closing that chapter of my life. After I’d recognised Cots for Tots for the support they’d given us, I felt like I could move on a bit. My skydive is where my journey of acceptance began. It was nice to feel able to give something back, and it’s one of the highlights of my life.

*_{Leon and JJ with Brabazon’s Gromit sculpture, ‘The Birds’. Photo credit: Brabazon.}*

We had another chance to support Cots for Tots and The Grand Appeal this year through the Gromit Unleashed 3 trail.

For the past two years, I’ve been living in Brabazon in Bristol with my partner and two sons, JJ and Leon. Leon was so excited about a Gromit Unleashed sculpture coming to Brabazon and to have a Gromit almost on our doorstep!

Because of our personal connection to NICU, Leon was invited to be the first member of the public to see Brabazon’s sculpture. He’s still quite little, so I’m not sure he entirely understood what he was doing at the preview event, but he had a lot of fun.

Having experienced such amazing care at St Michael’s NICU and Bristol Children’s Hospital, it was so nice to know that Brabazon was raising money for such a special cause.”

Over the course of the Gromit Unleashed 3 trail, Brabazon organised a packed programme of community fundraising events – including a film screening, a barbecue and yoga sessions. Harriet’s local community raised over £13,900 to support poorly children like Leon during their stays in hospital, which meant a great deal to her family.