8 June 2023

Baby Daisy inspires London to Brighton cyclists

Dan Young and Abigail Cleverley live in Waterlooville. They were delighted when in 2022 they fell pregnant, then scans showed problems with the development of their baby Daisy. Once born, they had 19 precious hours with her, and are supporting the Neonatal Intensive Care Unit in Southampton due to the care and compassion shown to them.

Dan says: “We’ve been together for five years and were so excited when we fell pregnant with our first child in January 2022.

At the 20-week scan at Queen Alexandra Hospital, Portsmouth in April, our baby was in an awkward position as the arms were above the head so you couldn’t see the head and heart properly. We were booked for another scan in a few weeks so they could check everything was ok.

We went back in May for a scan at 25-weeks. They took us aside to a little room and explained that they had discovered a problem. They thought she had Great Transportation of the Artery (TDA) which is basically where the arteries are in the wrong valves.

What followed was the longest weekend of our lives as we were referred to the specialist Fetal Medicine Team at University Hospital Southampton.

They were brilliant and immediately performed more scans. They had a cardiologist on hand to talk about the condition and what would happen after birth.

That was when we were thrown a curve ball. Scans showed that our baby girl’s kidneys were big and bright, and she had no amniotic fluid around her.

This was genuinely concerning for the medical teams. Babies use the amniotic fluid to practice swallowing and passing it as urine. She could not really practice breathing either as there was no fluid. In that second scan, we found her kidneys did not work, and it was causing her heart to beat too fast, putting a strain on it.

After that we had to see the renal team, cardiology team, neonatal department, geneticist, and palliative care team as they did not know what was going to happen if we made it to birth.

We had to go through every eventuality and had a bit of paper which said every action and outcome. We were coming in and out of hospital every two weeks for scans to check that our baby was growing.

We were given the option to continue the pregnancy or terminate. Doctors gave us a 5% chance of our baby girl being born alive, and we knew that was low, we had to give her the chance.”

Abi continues: “Our little girl kept hitting the milestones of 28-weeks, then 30 weeks, so we were hopeful. She was so active, and because there was no amniotic fluid, I could feel everything. Her foot was always moving!

I had a sweep at 38-weeks as she was big and developed as she was going to get. Dan went to work for an evening shift, but at 9pm, I started to feel some pains in my stomach and thought I’d gone into early labour. Dan returned at 11.30pm and we both tried to get some sleep.

We arrived at Princess Anne Hospital labour ward around 7am on Friday 30 September, and baby Daisy was born 11.22pm that evening. This was by emergency c-section as the labour wasn’t progressing and they needed to reduce the stress on Daisy.

We did not know how long we would have with her due to her underdeveloped lungs, or if she would even be able to survive labour. She was born, and she squeaked twice! It was amazing. I cannot even describe that moment. She was our perfect baby.

Doctors showed her to us, and medical teams when immediately conducted tests. We were told she was really poorly, and they couldn’t get her stats above 50%.

We got to meet her, and took photos with her, and then Daisy was rushed to the Neonatal Intensive Care Unit. Dan stayed with her while they were doing tests and while I was stitched up from the c-section.”

Dan says, “Daisy had to use a specialist machine called high frequency oscillator machine as that was the best way to develop her lungs and increase her chances of survival. This puts air and shakes lungs gently to try and strengthen and expand lungs.

That was the strongest ventilator on the unit.

Daisy was such a fighter. She grabbed my finger and that was such a surreal moment.

She lasted 19 hours on the machine, then started to decline.

We called our family who all rushed to meet her before we had to make the difficult decision to turn off her life support. We were transferred to a private family room where we could cuddle her and take lots of photos.

Sadly, she passed on 1 October as 6.27pm.

The medical team were simply amazing. You don’t know how amazing nurses and doctors are until you are in that position. They made sure that everything fell into place when we needed it, and it was little touches that made all the difference.

When in theatre they had Spotify, so they played a special song for us. I did not even know that was possible! It is a happy song that we connected with Daisy, so we played for when she came into the world, and when she passed.

We have so much gratitude for everyone who cared for us.

Genetic tests showed that Daisy had something called Denys-Drash syndrome which affects the kidneys and a WT1 genetic disorder. This combination is very rare.”

Our cycling challenge for Daisy

Dan continues: “On 18 June there are four of us cycling from London to Brighton. Initially, I didn’t realise that was Father’s Day but I think it makes it even more special for me.

We’ve already raised over £5,200 for Southampton Hospitals Charity. We’ve loads planned this year in memory of Daisy, including a team for the Great South Run later in the year. We want her memory to live on, and everyone to remember her.”

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