I am taking on the iconic Bath Half Marathon in October 2023 to raise money for The Grand Appeal and support Bristol Children's Hospital! Please support me in my challenge by donating and making a huge difference to the brave young patients, and their families who are treated in the hospital every day. This is something that over the past few months has become very close to my heart. Please read our little Freddie’s story.

Freddie’s Story. 

On the 29th July 2023 Little Freddie entered the world with a number of heart conditions that required him to have a stay in hospital. Freddie is a Tetralogy of Fallots baby, he has Pulmonary Atresia with a Ventricular Septic Defect (VSD). This ultimately meant he needed surgery to rectify the issues in his heart. 

Being induced at 38 weeks, and being born at St Michael’s hospital in Bristol, Freddie was taken straight into NICU (Neonatal Intensive Care Unit) where he would get closely monitored 24 hours a day. 

After a promising start to life in the NICU, Freddie was moved over to Bristol Childrens Hospital on the 2/8/23 where he went to the Dolphin ward (Cardiac Ward) where he eventually spent around 10 days. 

On the 7th August, Freddie underwent his first medical procedure, the aim was to fit a PDA stent in order to keep his Ductis open allowing him to continue breathing and allowing the blood to pump around his heart to his lungs. Unfortunately due to complications and the complexity of Freddie’s heart, the PDA stent was unsuccessful meaning that Freddie would have to undergo Open Heart surgery at a later date.

On the 10th of August, we found out that Freddie would have his operation on the 11th August.  

Operation day arrived and we took Freddie down to theatre to leave him in the capable hands of the surgeons and anaesthetist’s. The planned procedure was a Sano Shunt which would allow his heart to function by using the prosthetic artery that they would be fitting. After the procedure we were moved to PICU (paediatric Intensive Care Unit) which allowed his chest to be left open to allow the swelling to go down and to allow quick access if needed. 

After what initially seemed to be a successful operation, Freddie developed some complications later into the evening on the Friday, where he ended up having an emergency exploration procedure closing the ward in PICU in order to allow the surgeons to do there work. 

His condition then improved and he had a stable night. On Saturday evening, Freddie began having complications again Freddie was taken in to the Cath Lab to have more work done where they decided to fit a stent into the Sano Shunt as one end was slightly linked due to some muscle tissue putting pressure onto the shunt.  This seemed to settle him down and allow him to be more stable. But his chest was left open just in case there was any more complications. 

After a stable end to Saturday and afternoon on Sunday, Freddie’s Chest was closed and things began to move forward.  

After a couple of really good days, coming off the ventilator and breathing on his own Freddie was going to he moved out of PICU and back to the High Dependency Unit on the cardiac ward at Dolphin.

 Unfortunately we never made the move, Freddie deteriorated severely overnight, requiring emergency surgery again in order to try and help fix the issues that had occurred. Due to uncertainty of what had happened and the severity of the decline Freddie was fighting for his life and as parents we received the worst news possible and was told by the consultant to prepare ourselves for the worst as things were so bad that they didn’t think he would pull through what was to come in the hours ahead. 

They was going to put Freddie on to a heart bypass machine (ECMO)  to take control of his  blood flow around the body allowing his heart and lungs to rest. They also thought he had severe sepsis so was also going to place him on dialysis machine in order to help clean his blood of all the toxins. So what was a perfect Tuesday evening turned into our worst nightmare in the early hours of Wednesday morning. As the hours ticked by Freddie was being worked on by many different people from ECMO specialist doctors and nurses to the top cardiac surgeons   As the afternoon approached we had been given the news that the surgeon had managed so apply a number of clips to the Sano shunt which in turn allowed Freddie’s heart and lungs to be more balanced resulting in him being in a more stable position and thankfully not needing the ECMO machine.  

When being able to finally see Freddie again after what felt like the longest 6 hours ever we was shocked to see the dialysis machine next to Freddie’s bed space but not actually connected up to him. This was a result of After running more blood gases and tests his infection markers and extremely high Lactates were slowly coming down on there own meaning Freddie was kept off the Dialysis as it would have been a bigger risk for him and his frail little body. 

After days of test after test and continuous observation Freddie started to stay stable and the decision to close his chest once again was made on Friday 18th August but with the decision to remove one of the 3 clips fitted on to his shunt. 

After continuing to be stable and head in the right direction the drama didn’t finish there. On Tuesday (22nd August) after a rocky night with deteriorating saturations Freddie had a scan of his heart. This brought to the attention of the cardiac specialists that Freddie had intact had a Pericardial Effusion forming around his heart which needed immediate attention resulting in once again another emergency trip into theatre to have it drained. Whilst doing this another clip was added onto the Sano Shunt as a result of the fluctuations in his saturations over the previous evening. 

From a Cardiac point of view, this was the last hurdle so far in what has been the craziest 5 weeks although there had been a minor setback as Freddie’s catheter had caused trauma so therefore he had to have a SupaPubic Catheter fitted instead resulting in a litter procedure. 

But with a huge amount of pride and an abundance of admiration for this amazing little boy, we are pleased to say that Freddie, just after turning 1 month old has left intensive care and is doing his best to try and make it home  so that we can begin creating memories outside of what has so far been a life of hospital. 

Freddie will require a number of operations in his lifetime and his next one will be in a few months time for a full repair on the VSD and to increase the size of the Shunt to allow him to grow with a healthy balance in blood flow between the lungs and the body. 

We are super proud of Freddie and his amazing strength and fight he has shown to get him through what had been an exceptional start to life. 

We wouldn’t be where we are today without the great work that has been done by the staff Here in Bristol but also with the support from the Grand Appeal and Cots for Tots. 

This organisation allows families like ours to have endless support whilst away from home, with the psychological side of things but aswell as providing accommodation for families who live a fair distance away from the hospital. It allows parents to be close to there children 24/7 as long as they need it. They also provide many things to the hospital itself by helping to fund life saving equipment and help with research into Childrens health.

The staff have been amazing and none of this support would be available if it wasn’t for the donations and support for this charity. As a way of saying thank you, I will be running in the Bath Half Marathon to raise money for the Grand Appeal so that they can continue to grow and help more families like mine that really do benefit from the facilities they have available helping to take away many everyday stresses that come along whilst being hospital allowing us to focus solely on helping our little ones get home. 

I know it’s hard in these tough times with the cost of living crisis we face, but could I ask if  you could please find a way to donate and help support this wonderful charity. Anything is better than nothing and will help go a long way to help provide a support for families that need it aswell as help the hospital in many different ways to make the experience of being in hospital as pleasant as can be. I will leave a link below to there page so you can see for yourself some of the incredible work they do to make a change to families whilst I’m hospital. 

From My family to yours.  

Thank you! 

https://www.grandappeal.org.uk/

Here’s just a few examples of how your donations could be spent:

 ·         £5 could fund a selection of books for parents to read to their newborn babies in the NICU. Research has shown that reading frequently to preterm babies can result in significant decreases in heart rate, improved deep sleep and sometimes even reduce the length of stay in hospital.  

·         £10 could fund 50 of the 4,600 felt-tip pens the Activities Centre in the Children’s Hospital use every year, helping keep children busy and distracted.  

·         £50 could fund a music therapy session for a child at their bedside. Music therapy is an important part of the care funded by The Grand Appeal, helping to reduce anxiety, aid recovery and offer a creative outlet for many of the different feelings that children may experience during their stay in hospital.   

·         £100 can help provide lifesaving equipment such as a Neopuff to help tiny babies breathe.   

·         £200 can support the running of our family accommodation house for a week, providing somewhere comfortable for parents to stay, minutes from their child's bedside.