Autumn was diagnosed with a heart condition before she was born and needed surgery at just four months old at the Leeds Congenital Heart Unit.
Her mum Katelyn shares what the experience was like for their family – from diagnosis and hospital stays through to recovery.
“At my 20 week scan I found out that Autumn had an abnormal heart. At this stage we weren’t sure about her exact condition – how severe it was or anything!
“We then had many tests, blood tests and scans we eventually got a diagnosis of Tetralogy of fallot (ToF). I remember just bursting into tears in the room.
“Throughout the rest of the pregnancy, we learnt more about Autumn’s heart condition and we were told she would have to have open heart surgery at the LGI. Before I knew it my heart just sank into the unknown.
“When Autumn was born it was very overwhelming. I met the cardiologist and a few more people. Her ‘blue episodes’ started when she was about two months old and I’ve never been so scared in my life. Since the first blue episode, every single night I couldn’t sleep – I was always checking on her. Sometimes staying awake until 3am before I knew I could sleep.
“Autumn had about 4 ‘blue episodes’ then soon it came to surgery day…which got cancelled. To be honest I didn’t know how to feel.
“When we got a new surgery date, it came quicker than I expected. It felt as though I blinked and she was being taken down for surgery. That was longest day of our lives, it really was…
“I hated the thought of my baby girl being on an operating bed and me not even being in the room next to her! That day we walked 14 miles – just to kill time and try to distract our minds!
“We then eventually got the phone call and I was dreading to answer because I didn’t know whether it would be good news or bad news…and it was good news! We could see Autumn in half an hour in PICU – so of course we immediately stopped what we were doing and headed over to the hospital.
“The first time seeing Autumn with her tubes and drains was upsetting, but for me it was when she first opened her eyes. That will be a look I never will forget because she looked so scared and petrified.
“We were only in PICU for a day and a half!
“Autumn came of the ventilator just four hours after surgery and she was breathing on her own. She did then need a little bit of support and was given some oxygen, but she soon came off that too. She also went straight onto bottles as she ripped out her feeding tube twice! And she did so well with feeding on bottles again.
“Then we headed over to Ward L51. We were on the children’s heart ward for a few days and it was here that we also met a lovely family who made a worrying time a little bit more bearable and happier! Before we knew it, it was time for Autumn to be discharged.
“Since coming home Autumn’s is doing really well and her recovery is progressing.
“Honestly, we are all so proud of her considering she is only 5 months old and was only 4 months old when she had the surgery. She really has done amazingly. What a little warrior she is!
“I just want to thank everyone who was in involved with Autumn in the hospital, especially the nurses on L51 and in PICU!
“I want to thank Children’s Heart Surgery Fund as they brought me some things to keep my mind occupied on the night of Autumn having her pre-op stuff done. We had a room to stay in while she was in PICU and they were also kind enough to give us a Tesco voucher to help with the expenses of buying food while we were in hospital. Thank you also for giving Autumn a Katie Bear and a certificate – this will always be a powerful memory for Autumn showing just how well she did, and just how much of a fighter and warrior she is!
“Autumn is now doing really well and is loving being back at home with her sister Grace. We are forever proud of our Autumn.”
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