Maisie's story

Told by her mother Louise

We found out that our baby was going to be born with a heart condition during a scan at 16 weeks and it was confirmed at 20 weeks that the condition was Tetralogy of Fallot.

Baby after heart surgery

Maisie after surgery

Baby and doll with heart surgery scars

Maisie with her Molly’s Dolly with matching surgery scars

Our beautiful girl Maisie was born on 7th December 2020 and she was absolutely perfect. After the birth Maisie was taken to NICU to have her heart scanned and monitored. Although her oxygen saturation levels were a little low, we brought Maisie home and had ten wonderful weeks as a family before Maisie was taken to our local hospital due to more regular “blue spells”- where baby goes blue around the lips and fingers when feeding and/or crying.

After a week we were transferred by ambulance to Glasgow Children’s Hospital where a decision was made to perform a full repair on Maisie’s heart. She was only three months old and the decision to operate had come much sooner than we had expected. Maisie’s dad and I were incredibly scared of the unknown however everything was explained thoroughly by Maisie’s surgeon and anaesthetist the night before, which helped ease our worries.

The day of surgery came and for hours and hours we both wandered around aimlessly, nervously awaiting news. At tea time we were called to let us know Maisie was out of surgery and in recovery; we made our way over to see her. Nothing can quite prepare you for seeing your baby post-surgery on a ventilator knowing that you can’t scoop them up and comfort them. They are swollen, covered in tubes and wires and unresponsive. It is very hard at that point to imagine taking your baby back home. Knowing that Maisie could hear us gave Robbie and I comfort and we spent the days reading her stories and singing songs.

Over the following days Maisie took a dip and she had further surgery three days after the first to repair her tricuspid valve due to regurgitation. Over the next month Maisie made steady progress with her recovery in PICU. There were a few bumps along the road as Maisie developed necrotising enterocolitis, a side effect of being on bypass, and chylothorax which required Maisie to have seven chest drains in. After a total of eight weeks in hospitals we took Maisie home.

Six months later, Maisie no longer requires her feeding tube, she’s an incredibly happy, delightful baby who loves to explore. She enjoys swimming lessons, painting, trips to the park and seeing her friends at baby classes. You would never know, by looking at Maisie, the journey she’s been on so far.

Perhaps we were a little naive in thinking this would be a simpler journey than it was but the reality is that it was incredibly tough and the days were long and dark at times. However, Maisie has an incredible strength and resilience than we can only aspire to.

We are forever grateful to all the staff at Ninewells hospital and Glasgow Children’s Hospital for their dedication and compassion shown during Maisie’s stay with them. Thanks also to Ronald McDonald House for looking after us so well too. It wasn’t easy but we are blessed with our little girl and we make every day count.

“Sometimes real superheroes live in the hearts of little children fighting big battles”

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