Freddie's Story
Back in June this year, Vickie and Steven were living a typical busy family life, balancing work with caring for their two young children Millie, then five, and Freddie who had recently turned three. Millie, who loved singing and dressing up, was in her first year in primary school and Freddie, described by his mum as a ‘chatterbox’, loved his balance bike and all things building and construction.
The week that changed their lives started with a family trip to the cinema. Vickie noticed while they were out that Freddie had a bit of a temperature and wasn’t his usual lively self. After giving him a dose of Calpol, she didn’t think too much of it until the following morning when she noticed that the glands around his head were raised. Concerned, Vickie took him to the out of hours doctor who said that Freddie had a virus, which may have been rubella. He spent the next few days cuddled up on the sofa, but on the Wednesday things took a turn for the worse. Freddie was being sick and was sleeping almost constantly. They went back to the doctor but were sent home with a diagnosis of a virus. The next morning, Vicky woke Freddie and noticed that his lips were a funny colour and that his arms and legs were unusually cold. She phoned the doctor again, insisting that this time, something more needed to be done.
The doctor sent Vickie and Steven to their local hospital in Merthyr. Even in the car ride over, Vickie says she could see Freddie deteriorating with every minute that passed, and by the time they got there, the nurses couldn’t even get a line into Freddie to give him fluids. His veins were practically inaccessible as his body was completely shutting down. At first the clinical team who saw Freddie thought he may have been poisoned. In fact, Freddie was fighting off four different viruses at the same time. The viruses had somehow got into Freddie’s heart and were savagely attacking it. As a result his heart was barely functioning. His little body was shutting down his other major organs to try and preserve any oxygenated blood it could pump to send to his brain.
By pure luck, there was a paediatric cardiologist on duty in Merthyr hospital that day. He examined Freddie and immediately noticed that his liver was enlarged and ordered an urgent echocardiograph, Xray and ECG. Suddenly the room was filled with people and Vickie and Steven were told that Freddie was extremely ill. He had fluid around his heart, his left ventricle was barely functioning, and his liver and kidneys were shutting down. The WATCH team where on their way to take Freddie to Bristol Children’s Hospital and as there was only room in the ambulance for one parent, Steven went on ahead. Vickie just had time to say goodbye Freddie and give him a kiss before was taken to theatre to be put onto life support. Vicky says she’s thankful that, at the time, she had no idea that it would be last time she would be guaranteed to hear Freddie’s lovely little voice speak back to her. Vickie waited anxiously outside theatre, alone and in shock at how quickly her world was falling apart.
Vickie said: “After about 45 minutes of waiting for Freddie to come out, I asked the nurse why it was taking so long. She told me they were stabilizing him but couldn’t tell me anymore, and I had to wait for the consultant on the WATCH team to speak to me. After a while longer, the consultant came out and explained that they had taken longer than usual to put Freddie onto life support as he had to be d on the resuscitated on the theatre table. The medical team then took me to be beside him to be taken to the ambulance. The sight that greeted me was horrific. Freddie was intubated and absolutely covered in wires and tubes, something no parent should have to witness.
“I kept asking if he was going to be ok, desperately searching for some reassurance. But all that the medical teams could say was – ‘he’s in the best hands’. I was told I had to sit in the front of the ambulance, and that if the ambulance stopped that I was not to get out because it would only mean one thing – that they would be resuscitating Freddie. I spent that whole ride to Bristol willing with every inch of my body for the ambulance not to stop.”
Once in Bristol, Freddie was rushed to the paediatric critical care unit (PCCU) where a bed and medical team was ready and waiting for him. He was extremely sick and his prognosis was described as minute by minute. Vickie and Steven were sat down and told that, as Freddie’s heart was failing, his other major organs were shutting down too. The safe levels of a hormone called Brain Natriuretic Peptide (BNP), which is released by the heart when the ventricles are stretched, is normally under 100. When first tested in Merthyr a few hours earlier, Freddie’s were 44,000. When tested again in Bristol, his BNP levels were unrecordable because they were completely off the scale. A horrified Vickie and Steven were asked to sign consent forms for surgery that they knew their son may not survive. But there was no option. Freddie needed to have a temporary pacing wire inserted into his heart to keep it beating.
Freddie was on many life support infusions but over the next four days, fluid continued to gathering around his body as his internal organs continued to fail. On the Monday, his blood pressure dropped to 40 and, realizing that they were rapidly running out of options, the team took Vickie and Steven aside to tell them that the only thing left was to put Freddie onto ECMO, a machine that takes over the heart and lung function, adding oxygen and removing carbon dioxide from a patient’s blood supply. ECMO is only used when all other life support options have failed for cardiac patients because it comes with very high levels of risk. Once again, Vickie and Steven were asked to sign consent forms that warned of the worst possible case scenario, but knowing that they had no choice, they consented.
Vickie said: “Freddie was put on ECMO at the same time as another child, who sadly passed away on the second night. We were convinced at that point that we were going to lose Freddie too. The forms we’d signed spelt out very clearly the risk of death from the last chance life support he was on. But we knew too that, if this didn’t work, we were out of options. Thankfully, Freddie stayed stable for five days on ECMO until the medical team slowly started re-introducing blood back to his heart. Once the blood flowing to his heart got to 75% we had to leave the unit for the final stage, not knowing whether Freddie’s heart would cope with the re-introduction of 100%. But thankfully it did. Being told some good news after days and days of complete emotional agony, was the most incredible feeling.”
Freddie stayed on life support for two more weeks. The first attempt to extubate (remove breathing support) failed as his lung had collapsed. Vicky and Steven watched on helplessly as their son’s stats dropped and he had to be re-extubated to save his life. A few days later, Freddie did move down to a less invasive type of ventilation. As he was gradually weaned off the huge amounts of sedatives he’d been on, Freddie started to regain consciousness.
Having lived minute to minute for weeks with their son’s life hanging in the balance, the removal of Freddie’s life support felt like a huge hurdle jumped for Vickie and Steven. But the fear they’d felt was quickly replaced with something else. While on PCCU, Freddie had undergone a CT scan and MRI which revealed subtle differences in his brain. He’d also suffered a brain bleed which they knew was a risk associated with ECMO. As Freddie regained consciousness, Vickie and Steven eagerly anticipated the return of the Freddie they knew. But those expectations quickly changed.
Vickie said: “We knew there could be subtle differences, but we’d seen other children come around from life support and they seemed fine. But Freddie was like a newborn. He had no head control, he couldn’t speak and there was no eye contact. He didn’t even respond to our voices. Due to the lack of oxygenated blood that could get to Freddie’s brain while he was so poorly it had swelled. We were told that we’d have to wait until the life support sedatives were fully out of Freddie’s system before we’d know the extent of any brain injury.”
During the agonising wait for more answers, Vickie and Steven decided to move back to Wales to continue Freddie’s care. They arrived at the Noah’s Ark Children’s Hospital shaken and deeply traumatised by their experiences, with no certainty at all of what the future held for their little boy.
It was at this point that they met sparkle co-ordinator, Emily.
Vickie said: “From the moment Emily introduced herself in the corridor, she was the sunshine in our very dark time. Though Freddie was very slowly starting to show signs of improvement, there was still so much worry and fear, but Emily made sure we had the bright spots right from the word go. She noticed very quickly how much of Freddie’s stuff was Spiderman themed so she arranged for Spiderman to come for a visit. As Freddie became more alert, she’d bring in the therapy dogs to entertain him and pop in regularly to check in on him with little treats.
And it wasn’t just Freddie Emily was there for. She’d notice when I was feeling particularly down and be around to cheer me up or just to be a shoulder to cry on. And she never forgot our daughter Millie who has been so incredible through all this. Whenever Millie was around she’d include her in everything. When Millie was nervous about going back to school in September, with all she’d been through during the summer and with us still in Cardiff with Freddie, Emily sent her a bravery box full of treats and certificate to say what a great big sister she is.”
“Freddie had intense rehabilitation for months at Noah’s Ark and had lots of different treatments and procedures. Understandably, especially as Freddie wasn’t able to communicate his needs or fears, he became quite wary of adults. But he was never like that with Emily. In fact one of the words he said after months of being unable to say anything, was ‘Emily’.
In mid-October, Freddie was discharged from the care of the cardiac and neuro teams in hospital and was considered well enough to continue his neuro rehabilitation in the community at home. Though he still uses a wheelchair, Freddie is able to walk and even run short distances, and his communication is slowly and gradually starting to improve. Freddie’s consultant describes his brain injury as a Google Map that has lost it’s connections to certain locations. His brain needs to find them again by creating new pathways, which will take time. Sadly, there are no guarantees as Freddie has suffered a significant acquired hypoxic brain injury. But with his determination and the love of his family behind him, Freddie’s parents are hopeful.
On Freddie’s last day in hospital, Emily was able to arrange a leaving party, which also doubled up as Mille’s sixth birthday party. There to say goodbye was the team that supported Freddie’s recovery, including his physios, speech and language therapists, consultants, occupational therapists and, another of Freddie’s favourites, Daisy the therapy dog.
Vickie says: “It’s so important that children and families have moments of happiness and fun when they’re in hospital, when they’re often experiencing some of the worst moments of their lives. Supporters of the Noah’s Ark Charity make Emily’s role and the activities she organises possible. I could list so many terrible days we’ve had throughout this experience, but when I think of the good ones, Emily has always been involved somewhere. And as a family, we’re so grateful for that. Emily has provided light in the darkest time of our lives, and we will forever be grateful to the Sparkle Appeal and Noah’s Ark Charity for that.”
