TJs Story

Hi guys, in honour of our little superhero TJs 1st Birthday we decided to organise a fundraiser for Temple Street Childrens Hospital. The care and compassion showed to us during the many weeks we spent in temple street is something that will stay with us forever, we owe each and every person we met on this journey a lifetime of gratitude for saving our little boy. To all the people we encountered along the way, the numerous doctors, nurses in both St Gabriel’s ward, St Michaels ward, ICU in Temple Street & CUMH, ambulance drivers, hospital catering staff, cleaners, other parents in similar situations and to all our wonderful family, friends, the incredibly supportive and compassionate companies we work for and people we met along the way who kept us going and wiped our tears throughout TJs battle we are eternally grateful, we dread to think where we would be today without you. One hard night roaming the corridors whilst we couldn’t sleep a little image in the parent’s tea-room became the quotation, we repeated daily until indeed the storm did pass.

“This storm is making me tired,” said the Boy. “Storms get tired too” Said the Horse, “So hold on”.

Whilst this has been a hard upward journey with many setbacks and some dark days, we look at TJ now – our little boy has come out fighting from the very first moment we laid eyes on him. He never stopped battling to get to where he is today, and we are nothing short of mesmerised by you our darling boy. While we don’t know what the future will bring, we do know one thing – nothing will stop you achieving what it is you need to do, TJ has the support of the most amazing people both in our home life and with the incredible team of doctors we have had the honour of meeting.

Happy 1st Birthday our darling boy, you made it xx

Here is TJs Story

At a 36-week routine scan it was discovered TJ had a massive amount of fluid build-up on his brain and his head circumference had increased rapidly in size. The damage to his brain was unknown, the result of cutting the umbilical cord on birth was unknown. We were blessed with an incredible gynaecologist who assured us he would do the very best to safely deliver our baby – which he did!

Emma went on to have a Caesarean Section on the 12th of October 2022 in CUMH 3 weeks before TJs due date. The theatre was filled with doctors and nurses who made us comfortable , tried to abate our fears and assured us our baby would be given the best care on delivery, we were in all honesty terrified of what the next hour would bring, no one knew what to expect. Thank you to every person who was with us in that room – the care we received was incredible given the worry we faced of the unknown. To hear our son cry in the delivery room was the first sign we had that this little guy was coming out fighting, little did we know the battle he would face.

TJ was taken straight to the Neo-Natal unit in CUMH and popped into an incubator to keep him safe and warm. The following day TJ was taken for an MRI which showed post haemorrhagic hydrocephalus - a bleed on the brain. Hydrocephalus is a condition where too much fluid accumulates in the brain, causing pressure and damage to the brain tissue. It was unfathomable to us how something so catastrophic could have happened to someone so small. And how someone so small could take it all in his stride. As first-time parents, it’s hard to get to grips with every noise and to learn the new language of your child, but this was a challenge we never envisaged.

We were transferred via ambulance to Temple Street where we met the most wonderfully kind, empathic and quite honestly life changing team of neurosurgeons. At 5 days old TJ faced into his first brain surgery a bilateral endoscopic lavage and septostomy and EVD insertion which removed a clot from his left lateral ventricle. TJ began to have seizures at this point post theatre & was prescribed anti-seizure medicines. Another unforeseen event. Watching him go through that and wishing we could take it away from him, that we could take it ourselves is one of the worst feelings we could imagine. We didn’t know what direction to look or where to go next, but we kept telling ourselves “What’s coming will come, and we’ll meet it when it does”

The next day the team at temple street weren’t happy with how TJ was doing, and he was at once brought to theatre to face into his second brain surgery in 48 hours. After this surgery our little boy found it hard to wake up, given the trauma his little body had experienced in such a short time. He was transferred to the ICU unit in temple street and intubated which basically means a machine was breathing for him, during this time he also had a blood transfusion. After a week the tubes were removed, our little boy began to breath on his own again and we were allowed to give him a cuddle, he was then returned to the High Dependency Unit ward downstairs for a couple of days. We were transferred back to Cork via ambulance to the care of the wonderful nurses and doctors in the neo natal unit in CUMH where TJ was resting. Finally, at 4 weeks old we got to bring him home to meet his family. Nothing could beat that feeling of walking out the door with our little boy in his car seat. Finally, a “normal” event throughout this whole fever dream. Although we knew we were not out of the woods just yet, the sun was beginning to shine through the trees.

Unfortunately, the battle continued as after a few weeks TJ began to show symptoms of fluid build-up on the brain. Once again we were transferred from CUH to Temple Street via ambulance. An MRI scan showed that TJs ventricles were again filling with fluid so the decision was made to insert a VP Shunt, this essentially is a little drain that is inserted into TJs head, the valve will open to allow excessive fluid to drain off his brain and flow via an attached tube into his belly where he will excrete it. This was TJ's third brain surgery at 2 months old.

In February we made the decision to do a VP Shunt revision, this shunt allows neurosurgeons to adjust the flow of fluid from outside TJs head using magnets – cool!! This was TJ’s 4th and happily last brain surgery to date!

Due to the pressure on his TJs brain concerns were raised with regards to his eyesight. Under the care of the wonderful ophthalmology department in Temple Street we have been closely monitored and can happily say TJs eyesight is improving with each passing day! And trust us, he doesn’t miss a beat!!

TJ was diagnosed with hemiplegia cerebral palsy in the summer of 2023 by Enable Ireland, he is under the care of the wonderful physiotherapists and occupational therapists there to help with the symptoms associated with it. We have been honoured to have been accepted onto a medical trial for kids with cerebral palsy in the US, we look forward to partaking in this with TJ and to continually encourage him to reach his full movement potential.

TJ is a ray of sunshine to everyone he meets. All he seems to do is smile and laugh. It is astonishing to us how a boy, so small, who has been through more than most adults before his first birthday, has endured this journey with the utmost positivity, happiness and trust in people. We could not be prouder of TJ, and we are forever indebted to the staff of Temple Street Childrens Hospital.

Thank you from the bottom of our hearts, TJ, Emma & Tomás xxx