Méabh's Story
Méabh was a perfectly healthy little girl, met all her milestones, was very active and never complained of a pain or an ache. She did have a bump on the top of her head that didn’t feel right to touch. The bump was first noticed when she was a year and our doctors felt that it was the shape of her head and nothing to worry about.
Our gut feeling though was that it didn’t feel right and during a routine developmental for her little brother Séan and little sister Sadhbh, we pushed again to have it looked at and we got an X-Ray of her head booked. Méabh had just turned three.
Unfortunately, the X-Ray showed something abnormal. We got a call from our GP to get Méabh into University Hospital Limerick immediately for more tests and scans. We arrived at A&E on Tuesday the 13th of June 2023 and didn’t get home again until Tuesday the 5th of September 2023.
MRI and CT scans showed a very big ‘bump’ and a ‘bump’ that needed to be removed as soon as possible. We were rushed to St. Gabriel’s ward in Children’s Health Ireland at Temple Street by ambulance on Thursday the 15th of June. We would spend the next 12 weeks there. Séan (two years) and Sadhbh (five months) moved in with granny and granddad.
Méabh was diagnosed with a tumour called a meningioma, a tumour that grows from the membranes that surround the brain. It had managed over time to connect itself to her skull, her dura (the layer around her brain) and her brain itself. It was described to us as being about the same size as a tennis ball. Plans were put in place to get the ‘bump’ out.
Méabh had surgery to remove her tumour on Monday the 19th of June 2023 under the care of Professors Darrach Crimmins and John Caird. The surgery itself took just over nine hours and Méabh spent the following few days in the wonderful care of the nurses and doctors in ICU. Once she was stable, she was moved to what would become our home away from home – St. Gabriel’s ward and into the care of the most wonderful team of nurses you could ever wish for.
The aftermath of her surgery was an extremely difficult time. While the tumour itself was gone and initial results indicated it was benign in nature – its removal left us with a very different little girl. Méabh’s motor skills were very badly affected. She had lost movement essentially everywhere. She couldn’t move her hands, her legs, she couldn’t hold up her head or sit independently. We had no guarantee that these skills would return.
Slowly little gimmers of movement started to appear. Her hands started to get stronger – needs must when you need to get your dodie into your mouth! She started to move her legs and she started to get stronger. Her recovery, however, was not straightforward. Three weeks after the initial surgery Méabh started to show signs of an infection.
Heartbreakingly we ended up on a very complex journey when we discovered her Dura graft was infected. As a result of the infection Méabh had a very tough few weeks – she was put on a course of antibiotics that made her very sick, had several CSF Cerebrospinal fluid leaks and ended up on an external drain called an EVD and requiring a shunt to relieve the build-up of fluid in her head.
Once things stabilised her Dura graft was replaced, and we started to see light at the end of the tunnel. At the end of August Méabh had a bone graft (to replace the large part of her skull that was missing) and we could see home on the horizon. We eventually got home to Limerick with Méabh on Tuesday the 5th of September 2023. The Méabh we brought home still had major needs. She still could not sit or walk independently. She also had her stitches from her cranioplasty still in her head and fluid building up between her scalp and new bone. But we were delighted to have her home so we could start building her up.
From September 2023 to January 2024, we had some lovely time at home. We worked on Méabh – getting her stronger and stronger. She started in her Naíonra with her teachers Clodagh, Katie and Amy. She absolutely loves her Naíonra and is so well looked after by all there. Her classmates and teachers are the best. She got to work with her physio and her Occupational Therapist and got very excited about Santa. She spent time fighting with her brother and sister and getting out and about with her cousins. Life was starting to look a small bit normal again.
We knew we were in a bit of trouble as the fluid in her head kept building and building. Anytime our surgeons went to remove her stitches we ended up with more Cerebrospinal fluid leaks. The worry was always there at the back of our minds.
Then on Sunday the 28th of January our fears were realised. Méabh woke up early to tell her Daddy that her pillow was wet. Sure enough, the fluid in her head had leaked through her wound. We headed straight to Children’s Health Ireland at Temple Street and started another long journey. We ended up spending the next 17 weeks back with the heroes on St Gabriel’s ward.
During that time Méabh was treated with various antibiotics that caused her to feel unwell, she was put on an external drain (we spent a long time on drains which meant Méabh didn’t get off the ward for nearly 16 weeks) and she had to have surgery to internalise her drains. She also had to have her appendix removed (we prayed so hard the problem was her appendix – turned out it wasn’t – it was an infection caused from the fluid in her head).
Our surgeons then made the very difficult call (which we will be forever grateful to them for doing) to remove her bone and dura graft and start again.This was a very difficult setback for us as we knew what it would entail for Méabh. We also knew it meant we would all be away from Seán and Sadhbh for even longer.
From February to May, Méabh’s surgeons worked on getting her head right. On the 16th of April 2024 Méabh had tissue removed from both her legs to use as a graft to seal her Dura. This turned out to be life changing for Méabh. Over the course of the following weeks, it came to light that Méabh might not need her shunt anymore. Her shunt was removed at the start of May.
Méabh got home for her fourth birthday and had a birthday week! She got back to her childminder Úna (whom she adores) and back to her teachers and friends in Naíonra for a small while.
After a brief stint at home, we headed back to Children’s Health Ireland at Temple Street to get Méabh’s bone plate replaced. Méabh’s cranioplasty took place on 18th June (almost a year to the day when this journey started). Surgeons, Darrach, Dylan and Mo worked their magic and were extremely pleased with how the procedure went.
After 10 days, we were discharged from the hospital and are now on to the next phase of Méabh’s rehabilitation. Hoping this is onwards and upwards for Méabh the brave!!!!
