Beau’s Story

Heart hero, Beau, tragically passed away at seven weeks old. Beau’s mum, Tilly-May, bravely shares their emotional story:

(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)

Back in February of this year, we went for our 20-week anomaly scan. Unfortunately, a clear view of Beau’s heart could not be seen so we were sent to a more specialist hospital where the cardiology team could take a closer look at her heart.

During this scan, the cardiologists found a congenital heart defect commonly known as AVSD. We were given plenty of information about this condition and advised Beau would require surgery at around three to six months of age.

We were regularly monitored throughout our pregnancy and had a planned cesarean section at 38 weeks.

The day after Beau was born, she had a heart echocardiogram which showed a second heart condition, coarctation of the aorta (CoA), and a mild right leaky valve regurgitation.

After spending three days in the NICU, we were transferred to a bigger hospital where the specialists could take a closer look at Beau’s heart and work out a plan for us moving forward.

We arrived on Saturday evening, absolutely scared to death, not knowing what to expect. Our emotions were sky-high, as you can imagine. We had another echocardiogram upon arrival, and the whole team had a meeting on the Tuesday.

During this meeting, the specialists decided Beau would need heart surgery immediately to repair the CoA. Without this, Beau would have been very unwell and we wouldn’t have gotten as long as we did with her. The team also planned to take a closer look at Beau’s heart, as her left chambers were not growing as expected.

Her surgery was performed when she was just nine days old. The surgery took a total of nine and a half hours which to us felt like a lifetime.

Her surgical team was fantastic and did the best job they could – we will never be able to thank them enough. Beau went straight to the PICU where she had a nurse attending to her 24/7 for five days during the crucial stage of her recovery.

Beau smashed it – our fighter for sure! We returned to the HDU where Beau was before surgery. Her recovery continued and she came on in leaps and bounds.

However, on day nine of recovery, Beau suffered episodes of tachycardia and bradycardia, resulting in a detour back to the PICU where she was intubated for the second time.

This step back allowed Beau’s body to rest and recover. After a few days there, she was ready to return to the HDU (third time a charm). We had a private room there, which meant we could finally stay with her overnight for the first time since the day she was born.

During her first two weeks of life, her weight had drastically dropped due to feeds being paused before and after surgery and during her time being intubated in the PICU.

We finally got her weight above birth weight which was HUGE for Beau. At exactly six weeks old, we were able to go home… I won’t go into the emotional and mental trauma that myself and her dad suffered during those six weeks, but we were so well taken care of by all the staff and never felt alone – not even for a second.

I became a parental expert on Beau’s condition, medicines, and routine, and would be active during the daily ward rounds. The nurses would say, “You’re practically a nurse now Tilly!”

I found it very surprising that not all parents were as hands-on and involved as we were, but every parent deals with this differently, and until you’re in our shoes, you can’t judge.

Beau was the happiest little girl – you honestly wouldn’t have known what she was going through to look at her. All the nurses, specialists, and consultants doted on her as she was one of the longest patients there. They really did become our second family during our time there.

We loved finally being home as a family, but it wasn’t long before I had the dreaded nagging mum instinct that something wasn’t right. I spent so long looking at monitors, reading numbers, and getting to know her normal, that I just knew something was off.

On the Sunday, we decided to take her to our local children’s ward. I noticed she had subcostal recession which sent alarm bells ringing as this was something that happened previously which resulted in her returning to the PICU for the second time. However, the doctors were happy that she had no other symptoms and all her observations were in her normal range so they sent us home.

Despite this, the nagging feeling didn’t disappear, so I rang our community nurse first thing on Monday. She came out the next morning and agreed Beau’s respirate was higher than they’d like, so she sent us to our local children’s ward to be checked out again. If only I knew that was the start of the end of my whole world.

During the first couple of hours in resus, the team tried their best to cannulate and intubate Beau, but she, unfortunately, suffered three cardiac arrests. The words, “I’m so sorry but the team is working on her right now”, will echo in my nightmares for the rest of my life.

We ran in (again, I don’t need to tell you how much of a mess Sam and I were in). But, true to form, our little fighter pulled through. They weren’t confident that Beau would make it to the specialist hospital, so I did the only thing I could, and I prayed to my angels to help her be stable enough to make that journey, and she did!

Her high-risk heart consultant and the lead cardiac specialist met with us. They weren’t confident Beau would make it through the night but the team was doing all they could for her. Much of that night will haunt me and some of it will be lost in my memory.

Beau then suffered a fourth cardiac arrest and we were asked the question: “How much more do we put Beau through before deciding to stop?” Of course, we said do all you can until there’s nothing more to be done.

Beau’s brain had started to show signs of shutting down and they told us she would continue to slip into cardiac arrest. At that moment, our world stopped.

The team had reached a point where there was nothing more that could be done. They turned all machines off so we could just hold our baby in her final moments. We laid with her, talked to her, sang to her, and even cried to her.

Beau fell asleep for her final time on Wednesday the 31st of July at 1:10 am, at exactly seven weeks old. She suffered so much in her short life, and honestly, none of this is even a true in-depth account of exactly what we went through.

I will never forget the moment they told us there was nothing more they could do for her – I physically stopped breathing at that moment, and I will never recover from that.

However, despite everything, our girl was so loved and looked after by the whole team and she was given the best care any parent could ever wish for their child to receive.

During our time at the specialist hospital, we were supported by a charity called the Children’s Heart Surgery Fund. They provided us with accommodation, food vouchers, and takeaway vouchers. They even offered us a family day out.

Tomorrow, we lay our precious girl to rest – of course, it had to be on a Wednesday (she’s our Wednesday girl). Her life on earth may have been short, but her memory and spirit will live on through us all for the rest of our lives.

Congenital heart defects are more common than we realise – 1 in 125 babies nationwide are born with a heart defect. We knew nothing about this until we became parents of a heart baby, so I have decided to make it my mission to help other parents in any way I can.

Thank you for taking the time to read about our girl’s story. Please know, if anyone has gone or is going through what we have, my inbox will always be open.

I appreciate all the love and support we have been shown as a family while dealing with this horrific loss. Please keep your eyes peeled for the fundraising activities we will be doing in the future in our girl’s honour.

You are not alone. We are not alone. Our little heart warriors are not alone.