Mercie's Story

told by mum


In early pregnancy, I found out I was diabetic, I was put on insulin with regular 4 weekly check and scans with the diabetic nurses and consultants. At my 20 weeks scan the consultant saw something in the heart and asked me to go back 2 weeks later.

Shortly after birth we knew she would have to go to neonatal for her blood sugars to be stabilised, but when they pulled her out at 36 weeks, she was blue in colour and needing help with some oxygen. While we were in neonatal I was giving her the good stuff via a tube, and I noticed on the heart monitor what I thought that seems really high,  a midwife said babies heart rates do go fast after birth because of the body going into shock kind of thing,  so I  left it at that, then she was able to come and be  with me on the ward, during this time it would take her 45 mins if not longer to have any milk I gave her.

The day we were hoping to be discharged, the newborn check was being done and one of the consultants said they could hear a couple of murmurs, then later that evening a nurse came in and she didn’t like what she saw as Mercie breathing was different. Mercie went back up to neonatal and that night was horrible, they did blood gas after blood gas, the did chest Xray they then tried giving her medicine, oxygen, the had arranged for an echo to be done the following morning and an ECG.

Once those tests were completed, they finally had a diagnosis. Mercie was diagnosed with 1 large VSD 1 Small VSD, ASD  and  hypoplastic aortic arch.

On 30th January 2017, we had to take the long walk down to the theatre holding our two-week-old baby, nervous and scared.  6 long hours we waited, longest wait of our lives, we were nervous if they were able to do it all in one surgery.

Thankfully at 17:50pm she had come out of surgery, and we spoke to her surgeon, an amazing woman totally in awe of her. Then we were taken into the PICU, it was such a surreal moment walking in  seeing  your baby connected to wires, bit puffy and  a little sticker saying  CHEST OPEN very scary.

They explained they would close her chest the next day, hoped to let some of the fluid build-up go down, they had completed everything they wanted within surgery so she wouldn’t need another operation.

She had a massive setback, once we were back on the ward everything was just a typical Monday, all we needed to focus on was her feeding, however she had other ideas.

The nurses and a registrar came over to take her pacing wires and the Aline out, I was up by her head and the nurse said if she looks uncomfortable just blow on her face to remind her to breath…

Well, I’m there blowing, as they are taking the wires out and she starts going blue, before our eyes and no sooner as that happened the big red button was pressed, and people flew in from everywhere. So  madam had to  go back down  to the PICU, she had a collapsed lung, the surgeon came and reassured us that she went into respiratory arrest rather than a cardiac arrest, but that afternoon we just sat in a family room looking at brick walls, we didn’t get in to see her until about 5:30ish, once we did there was doctors after doctors coming over and saying how worried  they  were.

I was told there was at least 50 odd doctors around her bed trying to help and see what was happening. They tried giving her some potassium but they couldn’t get a vein, they even tried her shin bones, nothing while trying to get this medicine in. One of the consultants caught her clotted artery which was another worry added on.

It was pretty much smooth sailing from there, we finally left the hospital on the  22nd February 2017.

Well, what can I say. Mercie is sassy, feisty, a drama queen, diva the list is endless… defiantly lives up to being a redhead.  she loves cats, dogs, pretty dresses, sparkles, likes to be independent and helpful, also knows how to boss her older brothers about and get what she wants.

She has recently been expressing her like in being a teacher, but also likes to play with  her play kitchen and cook food.

She also LOVES going to COSTA, it’s all she’s ever known because her first outing from hospital was to yep costa.

I mean who doesn’t love a babycino!


If you have been affected by any of the issues raised in this content you can contact or 0300 561 0065.

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