26th March 2022

Showcase Saturdays

Greg Johnston

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Molly’s Story

For this episode of Showcase Saturday we have the story of the simply amazing Molly!

Molly was born in the RVI 4 days before our very own Evie, and today (26th March 2022) is her 7th birthday! It seems an incredibly fitting day to share her story and we want to say a huge Happy Birthday from all of us at Team Evie! We are sure you will be amazed by Molly’s story and everything she has faced in her life – we are incredibly proud to have played a small part in supporting her and her family on their journey!

Here is Molly’s story, told by her Mam and her Nanna:

Our princess Molly was born with a congenital diaphragmatic hernia (a hole in the diaphragm). She only had a 10% chance of survival when she was born (in the RVI) and she began to deteriorate and was rushed over to the Freeman where she spent a month on ECMO (Extracorporeal membrane oxygenation) life support because her lungs and heart were rapidly failing. Since then she has had 6 diaphragm repairs because her Gortex patch, used to keep her abdominal organs in place, kept failing and her organs kept migrating back through to her chest cavity and pushing her heart to the right side of her chest. The medical team had to do something they’ve never done before called a Lattimus Doris muscle flap repair. The 2 surgeons took Molly to theatre for 15 hours, it was basically her gift of life.

Muscle was taken from her back and used to reconstruct her very own diaphragm (so it would be much harder for her to re-herniate in future). She was on PICU for a long time being monitored to see if it the procedure was successful, as the muscle was at risk of failing inside her… Amazingly, it proved to be a success!

Since then she has had further surgical complications and her bowel was perforated due to extensive bowel adhesions, meaning Molly had to have part of her bowel taken away and an ileostomy formed. She was then transferred back to the ward and we thought she was eventually making progress…until she contracted sepsis in her central Broviac line (through which she gets her IV medications). When the line was used for antibiotics, it caused her to go into cardiac arrest.

She had to be resuscitated on the ward and was rushed back to Intensive Care, as she went into septic shock at the point they brought her back around. She was on life support for a week and was given all the inotropes they could to keep her heart going and she amazingly managed to pull through. However, we noticed after she was taken of the ventilator that she wasn’t the same little girl as before; she wasn’t playing with her toys and she wasn’t speaking (as she was she was a right little chatterbox beforehand with a huge character). An ECG revealed that activity throughout Molly’s brain had slowed. She was then taken for an MRI scan which confirmed she had a hypoxic ischemic brain injury (her brain had been starved of oxygen at the time she had her arrest).

We were devastated.

The Consultant on PICU told us to keep bringing pictures in of her family, showing her the things she loved and replaying videos over and over again to try and help bring her memory back; she lost the ability to walk, to talk and was constantly having myclonic jerking (involuntary jerks). It felt like the lights were on but no-one was home. I was so angry because I thought ‘Why let her fight through all this to then take her personality and character away from her?’.

But, a year on from this and she is doing absolutely amazingly from a brain injury point of view. After intense rehabilitation she has learned to walk again! We are still struggling with her speech but her funny character is starting to show again, she remembers everyone and everything but just struggles to get her words out.

Molly was admitted back in to hospital for a stoma reversal but unfortunately this didn’t go as planned. Following the operation she collapsed at home in my sitting room and had to be rushed back to Intensive Care – she had an anatomic leak and needed to have further surgeries & laparotomys . Molly has pulmonary hypertension and is on medication and oxygen 24 hours a day, has hydrocephalus and has needed multiple shunt revisions from her brain to her heart…

Above all she is still here and she’s still fighting through it all! She’s always smiling and you wouldn’t even believe that she has been through it all because she’s so happy and never let’s anything get her down! Molly is now at school and achieving things nobody ever dreamed she would!

The sad truth is hospital has been her main home for 5 years, she’s never known any different. Every single member of staff from doctors, nurses, physiotherapists, occupational therapists, surgeons, anaesthetists, most of the PICU staff and Team Evie have all have played a massive part in her life and have all given her exceptional care over the years – we are forever grateful to you all! We were supported by Team Evie a couple of times on our journey, you brought a beautiful box of goodies for Elisha, Molly’s mam, while she held her daughters hand as she lay on life support – you are amazing! It gave her so much strength and it was so touching to see how compassionate Team Evie are!

We have never forgotten Evie and her beautiful smile we will be forever grateful for your kindness in times of heartache.

Today (Saturday 26th of March) is Molly’s 7th birthday – and incredible milestone after only been given 10 % chance of survival and having nearly 60 operations to date.

Thank you Team Evie you play a massive part in providing vital equipment which is given parents at the worst times of their life and give then hope that tomorrow will be a better day!