Thankyou for taking the time to visit my JustGiving page. Below is a brief snippet of Aiden's story. It is in my words, hopefully showing what my family has been through over the past 19 months. It is a world I knew nothing about and a world I hope you never have to experience, but please support such an amazing charity like Great Ormond Street Hospital with whatever you can spare. 

Aidens Story 

We never wanted a home birth, the prospect of something going wrong and not being close to hospital was too much of a risk in our mind, but we quickly found out that nothing was going to go as we had expected it. We had a lovely pregnancy up to this point, with none of the tests and scans picking up any issues and we were low risk parents. I remember when people asked what I wanted a boy or a girl I always replied I just want a healthy baby and to be honest I had always said this as a given and paid no thought that anything otherwise would be the case. Aiden Shay Brennan was born at home after a very quick labour, one midwife got there in time the other arrived shortly after he arrived, they were amazing. Aiden didn’t breathe for 20 minutes, and they had to ‘bag’ him the whole time whilst we waited for the ambulance to arrive which was stuck in traffic (there had been an accident on the motorway). During this time most things were a blur, but when the midwife said Aiden looked as though he had Down Syndrome we remember that quite clearly. My wife looked at our little purple baby (5lb 7ozs) lying on the floor and repeated over and over “just make my baby breathe”. Amazingly, the midwife was so calm and I still got to cut his umbilical cord and this means so much to me.

 

Lucy had Aiden with her overnight on the delivery ward, he was struggling to keep his temperature up and wasn’t really feeding, but they didn’t know then about the holes in his heart. The next day we were told that they needed to take Aiden to check his blood pressure, he didn’t come back to the delivery ward. They told us that he needed a bit of help and was in the special care unit. They took us down to Gosset Ward the Special Care Baby Unit to see him. Nothing prepares you for the first time you see your baby lying in an incubator with wires. Then test after test just seemed to be coming back with more bad news. In the end they found four holes in Aiden’s heart with high lung pressure that complicated things further. Aiden had to be on continuous oxygen which meant only being able to move a few steps away from the incubator, it was always a novel concept when we moved rooms because it was so strange moving away from the wall albeit for 20 seconds.

 

We spent 7 weeks in Special Care. The staff there were amazing not just for Aiden but for us as a family. Going home each night without your child when they are so poorly is just such a hard thing to do, and as each day passes it doesn't get any easier. Aiden came home on the 20 October 2011 on continuous oxygen to wait for his surgery at Great Ormond Street Hospital in London. He had been doing well and was bottle feeding with no NG tube, unfortunately that didn’t last long as he deteriorated quickly, and was readmitted to hospital three times. This was very hard as we now had to care for Aiden in the “general” Childrens ward away from the “safety” and now familiar surroundings of special care. We had been told that catching a little cold would be devastating for Aiden, and were doing everything we could to try and reduce the chances of this.

 

Having to feed Aiden every two hours was exhausting, especially given the fact it took an hour or so to feed him, with sterilising equipment, winding him, changing him, preparing the next feed to the exact dosage, administering drugs at the exact time and dosage and added to this aspirating his NG feeding tube was incredibly tough as the test paper very often read close to or in the dangerous level (getting this wrong would mean we effectively drowned him by passing feed into his lungs if the tube had moved). All this whilst he was connected to continuos oxygen which meant even the most simplest of clothing changes had to be done with military precision being careful not to dislodge his oxygen supply. Aiden also had terrible reflux meaning after all this he was often sick, blocking the tiny oxygen tubes in his nose. We had to unblock or change the tubes quickly conscious that his stats would be dropping. Phew that was hard to write, hard to read, let alone do it continually on no sleep  24 hours a day, seven days a week for five weeks by two people that were not trained medical staff.

 

The stress waiting for the operation was unlike anything we have ever experienced, we were so tired, worried and had such a poorly boy that needed his mummy and daddy to be strong. One cancelled operation later and on the 24 November 2011, exactly 12 weeks old, Aiden had his open heart surgery at Great Ormond Street. Handing him over to the anaesthetist was so hard, watching Aiden suck his dummy and then fall asleep in my arms knowing the risks of the operation I did not want to let him go, we said our goodbyes and then watched him go as the doors to the theatre shut. Just hearing the anaesthetists voice on the GOSH documentary series bought everything back and made me shake and feel sick. Leaving the hospital and walking around the streets of London the day of the op was just a blur, we stopped for a drink in a cafe and the staff were so friendly asking “are you having a nice day” to which we somehow smiled and said yes thank you as the what would they say if we told them what was really going on!

 

Six and a half hours after leaving Aiden we got the news that the operation had gone well and that he was being transferred from theatre to intensive care. We waited for what felt like an eternity in the parents room whilst Aiden was settled, seeing the other parents faces in that room, the stresses they were going through and hearing their stories was humbling. We knew seeing Aiden in intensive care would be a shock even though we had been through so much already, but seeing my precious son in the bed with more wires than we could count, drains here there and everywhere, countless medicines being pumped into him, whilst being kept alive mechanically was so so scary. Aiden recovered extremely quickly and was off the ventilator in less than 24hours. When the nurse at GOSH suggested we go for a drink we reluctantly dragged ourself away from Aiden's bedside, to return a few minutes later to a very smiley nurse and a baby with no oxygen tubes. Seeing his little cheek with no wires made us both cry and the sensitive nurse gave us time together as a family to marvel at our beautiful baby  whilst she stood just outside the room. We were home in less than a week, we had been prepped to expect to be in hospital until Christmas! He still had his NG feed tube for a few more weeks and gradually his feeding improved to the point it could be removed. No more wires!!!!! Seeing the beauty of your child's face, for the first time properly after 13 weeks was amazing and a memory I will treasure forever.

 

September 2012, Aiden is doing unbelievably well, all the holes in his heart are now completely sealed, we celebrated his 1 birthday which was pirate themed. His giggles and smiles melt everyone. He particularly loves his swimming lessons, banging loudly on his drum, showing off his skills, particularly clapping and waving, and has just started saying mama and dada, which is such a fabulous sound! We feel so privileged and honoured to be Aiden's mummy and daddy and have so much love to give him. March 2013 and Aiden is getting a big boy now, he is babbling away although he has dropped saying dada with mumma being his word of choice along with milk (he knows what he likes). His smile is just as perfect as it has always been, he is learning to walk, he still loves his swimming. Mr Tumble is our new best friend and Aiden is learning to sign makaton allowing us all to communicate which is just lovely. He throws strops like me and is as demanding as his mummy at times. Hospital visits are still the norm, but they are part of Aiden’s life so we make the most of the journey with me singing out of tune to kids songs and Aiden smiling just to keep me amused.

 

The support we have received through Aiden’s journey so far has been fantastic and it is overwhelming to think of how many people were involved in his care, the messages of support from family, friends, friends of friends and people we have never met was just incredible and we can never thank everyone enough. Doing this run for GOSH is a small way to say thank you and I know it will not be the only event I undertake to somehow thank GOSH for saving my sons life, allowing him to grow, and allowing us to be a family. 

 

Thank you for taking the time to read our story.

 

Shay, Lucy and Aiden Brennan

 

xxx