Maisy was diagnosed with Down syndrome shortly after birth, and at just 7 months old, she had open heart surgery at the Leeds Congenital Heart Unit.
Her mum Laura has kindly shared their journey – from diagnosis, and the care Maisy received, to the support they’ve had along the way from CHSF…
“Maisy’s diagnosis was postnatal, towards the end of my pregnancy. I was in hospital a lot due to raised PI (pulsatility index) so I was induced at 37 weeks.
“Not even 12 hours after her birth, I thought I saw some characteristics and brushed them off – but a paediatrician said to us she thought Maisy had Down syndrome.
“Maisy is our fifth child so this was such a huge shock, and at that moment I just remember sobbing my heart out. A week later after taking her bloods she was officially diagnosed.
“With this diagnosis, as most will know, can come other health conditions. Maisy had a hip scan, all was well – and at 6 weeks old she had her all-important heart scan.
“We were running late for the appointment, so my husband dropped me and Maisy off and the plan was he’d wait in the car as we naively thought everything was going to be ok.
“It wasn’t…and I called my husband to come in while once again sobbing my heart out. From the get-go, the team in clinic were amazing, informative and extremely supportive.
“Maisy attended a few more appointments and by 2 months old she was placed on the priority list. After a couple of disheartening cancellations (which of course we understood) Maisy’s time finally came.
“We came into the LGI on 15th April and I did not sleep well that night. My husband went back home to be with the other kids, and I couldn’t sleep. I was worrying about emergencies coming in and her surgery getting cancelled again – my anxiety was through the roof.
“At 7am on the 16th April, my husband was back with us and we were greeted by a couple of people from the unit. By 8:30am, we were walking to theatre with our 7-month-old baby who at the time was very wheezy, had a constant cough and had noisy breathing.
“The hardest part by far was leaving her and walking away.
“Then the wait just felt like a life time. At 2:30pm we finally got the call from her surgeon and the instant relief I felt. Almost like I could suddenly breathe again when he said, ‘she’s doing really well and the surgery went really good, she’s on a light sedation you can come see her in an hour.’
“Well, I’m sure you guessed it I cried again with relief. I was so happy this part was over.
“When we went up to see her it was a shock, but surprisingly I did not cry it was as if I knew that equipment was there to help her. The staff on PICU (L47) were all so lovely and friendly. They were so happy to answer every question I asked – and there was a lot of them! They allowed me to help with washing Maisy and changing her bedding, but I was so desperate to get those mum duties back.
“CHSF has helped me and my family so much…they’ve helped us with so many things because as usual everything comes at once.”
“3 days post op Maisy’s breathing tube came out and 5 hours later I could hear her voice coming back. She was so ready to start shouting again. But even the day when she came back from surgery, her legs were going just like they did before. My little baby girl was holding back that little character inside.
“My husband was back and forth as he is the only one who can drive, and I stayed with Maisy for the duration of her stay in hospital. When I first met someone from CHSF the instant support was just amazing.
“5 days post op, off we went wheeling back to Ward L51. The first night she she stayed on high dependency and the next I was back with her. 2 days later (8 days post op) we went home!
“Maisy’s strength has made me stronger – watching her go through something so huge has been hard but it’s made me look at life so differently. She’s a little superstar.
“CHSF has helped me and my family so much. They’ve supported us through the journey of Maisy’s surgery and the journey so far with this heart condition, but they’ve also helped us with so many other things because as usual everything comes at once.
“Some cute certificates and Easter eggs for her siblings. Easter Bunny even came to give Maisy an Easter egg when she had to spend her first ever Easter in hospital. We’ve come away with some lovely keepsakes, her Katie Bear is the cutest. I will cherish them all forever and one day I will tell Maisy how amazing you all were at CHSF.
“The lovely Lucy even helped me fill out a DLA (Disability Living Allowance) form which I just found completely overwhelming. She brought a Tesco voucher too and did an application for the Family Fund with me. Honestly don’t know how I would have gotten through it without all the friendly faces and people around the ward.
“Thank you all so much. I don’t quite know how we could ever repay you enough for your help – but your charity is just fantastic.”
CHSF exists to support local heart warriors and their families. Empowered lives, because of you. There is no better way to explain our charity than using a powerful story – like yours.
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