Lochie Blue is 2 years old and lives in Silsden near Keighley.
He was diagnosed at 10 days old with Coarctation of the aorta, Ventricular septal defect (VSD) and Atrial septal defect (ASD).
Lochie and his family will be at this year’s Superhero Walk and we spoke to his mum Kate about Lochie’s condition and how they have been supported by CHSF during their heart journey…
How did you find out about Lochie’s diagnosis?
“Lochie was born at Airedale Hospital after an uncomplicated pregnancy with no concerns for his heart during scans. He was born at 36+6 due to me getting HELLP syndrome.
“Lochie was a tiny 5lb 3oz and his feeding was poor, so he was transferred to the Special Care Baby Unit (SCBU) for observation.
HELLP (Hemolysis, Elevated Liver enzymes and Low Platelets) syndrome is a rare, life-threatening complication of pregnancy that affects the blood and liver. It is usually considered to be a variant of preeclampsia.
“After a worrying 10 days where he continued to decline with no explanation, he was transferred to LGI for further investigations. An hour after Lochie arrived at LGI, an echo confirmed his diagnosis of coarctation of the aorta, VSD and ASD. They commenced medication to stabilise him, and we were informed open heart surgery was needed as soon as possible to save his life.”
What was your experience of the Leeds Congenital Heart Unit on both occasions? And how did you deal with the emotional challenges of being a heart family during treatment?
“My first contact with the congenital heart team was whilst Lochie was stabilised on PICU. A lovely lady came to see us at Lochie’s bedside to talk through the process of what would happen and arranged for us to see where Lochie would be taken after surgery.
“Becoming a heart family so unexpectedly was challenging.”
“This was comforting as we were in an unfamiliar hospital, away from Lochie’s older sisters, Lilly and Quinn, and we were absolutely petrified of what the future held. Our world had collapsed so we relied heavily on our closest family and friends to keep us somewhat sane and make sure our girls were comforted and supported at home.
“The staff on Ward L51 were warm, welcoming and happy to answer any questions we had. The amazing nurses always went above and beyond. From Nurse Lucy doing some night feeds when I was expressing or trying to catch up on some well needed sleep, to Nurse Lydia who supported me with breastfeeding and being there for a chat when I needed a distraction from the rollercoaster of emotions we were on.”
“Six months later, Lochie came in for his planned, second open heart surgery. As daunting as this was, it felt very controlled and much less stressful than previously. We were supported by the psychology team at Leeds who met with us at our pre-op with Lochie’s surgeon, Guiseppe Pelella to discuss his next operation.
“Becoming a heart family so unexpectedly was challenging. We felt unprepared as everything was massively out of our control. Our vision of taking our third and final addition home to meet his sisters was ripped away. Instead, we worried we would be telling his sisters the worst.
“18 days after Lochie’s birth we reunited as a family at LGI HDU. The girls met Lochie and had their first cuddle with him before he went off to undergo nine hours of surgery the next day.”
Could you tell us a bit more about what the team on the ward and CHSF did to help during Lochie’s treatment?
“The Play Team were fantastic providing toys for the cot, an iPad for distraction for Lochie when he needed to rest, and they played with him so we could grab some food. As it was Halloween there were decorations and goodies, so the little ones didn’t miss out on the celebrations.
“Lochie was presented with his second Katie Bear, medal and certificate which was a great comfort to Lochie whilst in hospital. It also reminds us daily of how strong our little heart warrior is.
“The practical things were all taken care of such as a car parking pass at the hospital and the CHSF-funded accommodation, so we had a place to stay close by.”
How is Lochie doing now?
“Now 2, Lochie is full of joy, always happy and smiley, even more so whilst plane-spotting! He loves nothing more than making his big sisters laugh and letting them run around after him.
“Lochie is so laid back. He’s never phased by his check-ups and enjoys lapping up all the attention. He’s now graduated to annual echos and has started pre-school. He has a few more hurdles to get over in the future with minor surgeries but right now he is loving life as a plane-obsessed, chocolate monster.”
Why do you think people should take part in the Superhero Walk for CHSF?
“The Superhero Walk is a fantastic, fun day for all the family with the added bonus of being able to give back and help raise funds to support the next family on the same journey we had.”
Join Lochie at Superhero Walk!
“Now he’s a big strong lad, Lochie will be donning his superhero attire and bossing the Superhero Walk this year. This is to raise vital funds to keep this service going and to support the families going through the same journey we did.” — Kate, Lochie’s mum
Join Lochie and his family at Superhero Walk 2024
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