written by mum Tilly-May
“Back in February of this year (2024) we went for our 20-week anomaly scan at Bassetlaw. Unfortunately, a clear view of Beau’s heart could not be seen so we were sent to Leeds General Infirmary so the cardiology team there (who are one of the UK’s top specialists) could take a closer look at her heart.
“During this scan they found a congenital heart defect Atrioventricular septal defect, commonly known as AVSD (two holes between the right and left pumping chambers). We were given so much information around this condition and told that surgery is something Beau would need at around 3 to 6 months of age.
“We were regularly monitored throughout our pregnancy, and I had a planned C-section in Jessops (Jessop Wing, Sheffield Teaching Hospital) at 38 weeks.
“Once Beau was born, she had an echo the next day where a second heart condition was picked up. They confirmed Beau had a Coarctation of the aorta and a mild, leaky right valve regurgitation. This wasn’t something they would have been able to detect until after birth.
“We were transferred after three days in Sheffield NICU to Leeds so the specialists there could take a closer look and work out a plan for us moving forward. We arrived in Leeds on Saturday evening absolutely scared to death not knowing what to expect, emotions sky high as you can imagine. I was three days post op myself, so things were totally up in the air emotionally.
“We had another echo by the specialist upon arrival, and the whole team at Leeds had a meeting on the following Tuesday. During this meeting the specialists decided Beau would need open heart surgery immediately to repair the co-arc. Without this Beau would have been very poorly and we wouldn’t have gotten as long as we did with her. They also planned to take a closer look at Beau’s heart as her left chambers were still not growing as they should.
Beau’s heart condition was initially diagnosed after the 20-week scan at Bassetlaw Hospital. Transferred to Leeds straight after birth, Beau had heart surgery at just 9 days old.
“Her surgery was performed on the Friday when she was just 9 days old. The operation took a total of nine and a half hours which to us felt like a lifetime. Her surgical team however were fantastic and did the best job they could, and we will never be able to thank them enough.
“Beau went straight to PICU where she had a nurse staring at her 24/7 for 5 days straight whilst she was in the crucial part of her recovery. She smashed it, our fighter for sure! We returned to the High Dependency Unit (HDU) on Ward L51, where Beau was prior to 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 which meant we had to take a detour back to PICU where she was intubated for a second time. This step back allowed Beau’s body to rest and recover. A few days there and she was ready to go back to HDU (third times a charm!)
“Everyone doted on her as she was one of the longest patients on the ward at that time. They really did become our second family whilst we were there.”
“After a few days of being back on HDU, we went out on to the ward and had our own private room. This also meant we could finally stay with her over night for the first time since the day she was born.
“During her first two weeks of life, Beau’s weight had drastically dropped due to feeds being paused before and after surgery, and whilst being intubated in PICU. We finally got her weight above birth weight which was HUGE for Beau. It took Alix the dietitian A LOT of work, but we did.
Beau was in hospital at Leeds for 6 weeks after birth and surgery, during that time they were looked after by CHSF who provided support, essentials and accommodation.
“At exactly six weeks old, we were able to go home. I won’t go into the emotional and mental trauma me and her dad suffered during those six weeks, but we were so well taken care of by all the staff on the ward and at CHSF that we never felt alone, not even for a second.
“I became a parental expert in Beau’s condition, medicines and routine and was an active participant during ward round every single day. 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.
“I always tried to look at our situation through the glass half full method and I believe that’s one thing that kept me going. Hope. Not only that, Beau was the happiest little girl you could ever meet. 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 on the ward at that time. They really did become our second family whilst we were there.
“We loved being home as a family FINALLY, but it wasn’t long before I had the dreaded nagging ‘mumstinct’ that something wasn’t right. I had spent so long looking at monitors, reading numbers and getting to know her norm that I just knew something was off, so on the Sunday, we took her to our local children’s ward.
“I noticed she had ‘subcostal registration’ which sent alarm bells ringing as this was something that happened back in Leeds (when she had to go back to PICU the second time). However our local hospital were happy that she had no other symptoms and all her observations were in her normal range, so they sent us home.
“The nagging didn’t go so I rang our community nurse first thing Monday. She came out on Tuesday at 8am and agreed her 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 where the team tried their upmost to cannulate and intubate Beau, she unfortunately suffered three cardiac arrests.
“The words “I’m so sorry but the team are 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 me and Sam were in – but true to form our little fighter pulled through. They weren’t confident that Beau would make it to Leeds so I did the only thing I could, and I prayed to my angels to get help. Get her stable enough to make that journey – and she did!
“Her high-risk heart consultant and the lead cardiac specialist on PICU that night met with me and Sam as soon as we arrived, and they told us they weren’t confident Beau would make it through the night. The team were doing all they could for her. A lot of that night will haunt me, and a lot 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 we make the decision to stop?” We obviously 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. Our world in that moment stopped. They 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. She went to sleep for her final time on Wednesday 31st July at 1:10am – at exactly 7 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 could write a book, and it still wouldn’t be a patch on 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 in that moment, and I will never recover from that.
“Our girl was so loved and looked after by all the team at LGI, and she was given the best of the best care any parent could ever wish for their child to receive.”
Now in its 22nd year, Baby Loss Awareness Week (9-15 October) is run by the charity Sands and works to break the silence around pregnancy and baby loss, as well as it being an opportunity to share stories and remember the little ones gone too soon.
Sadly many families in the heart community have experienced the loss of a child or a pregnancy.
We are so grateful to parents, Tilly-May and Sam, for sharing Beau’s story this week.
Can you make a life-saving donation to help fund our vital work for local heart warriors?
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