"It's been quite a journey": Hendrix's story
September 11, 2023
Jon and Andrea were desperate to be parents.
And after the gift of IVF from Jon’s late father, Andrea fell pregnant with the wonderful Hendrix.
Hendrix is now a cheeky two-year-old boy, but as Jon said, “it’s been quite a journey to get there – that’s for sure.”
Guest bloggers: Jon and Andrea
In February 2021 Hendrix was born, which resulted in a stay of 10 months in hospital. Shortly after birth, he was rushed to Evelina London Children’s Hospital, and this is where our connection with Ronald McDonald House Charities UK began.
After a very straight forward pregnancy, Hendrix was born in our local hospital. This is where life took a very unexpected turn.
All that you dream of and expect after giving birth did not happen. Instead of holding our baby in our arms, Hendrix was born unconscious needing resuscitation. During checks straight after, other abnormalities were spotted. We didn’t see Hendrix for a long time after the birth and instead we were delivered the news that he might not survive the night.
Hendrix was rushed to Evelina London Children’s Hospital to have lifesaving surgery. This would be to stretch his oesophagus which hadn’t grown properly – without this he couldn’t feed. He also needed bowel reconstruction and to be fitted with a colostomy bag. There were also many implications from the birth, brain damage, seizures, the list went on.
The surgery saved his life, but he had a long road ahead of him, which is how we came to call Ronald McDonald House Evelina London home.
We say ‘home’ because that is how it felt. With immediate warmth from the minute that you walked through the doors, and amazing staff with a friendly face that means so much after such a hard day.
He then spent three months on various wards in the Evelina London Children’s Hospital and being seen by so many different specialists to help his recovery.
In April 2021 he had another major surgery to help him breath and after having to wear a fully pressurized face mask for 23 hours a day, he was finally able to breath on his own.
Throughout this time, the wonderful staff at the Evelina London Children’s Hospital took amazing care of Hendrix, but it was the Ronald McDonald House that took care of us.
During this time, it was the height of Covid-19 and Ronald McDonald House was our sanctuary.
As the pandemic rules didn’t allow us to be in the hospital with Hendrix at the same time, one of us would always be at the House.
We spent a lot of time there alone, as one of us would always be with our son.
Our families couldn’t be with us due to Covid restrictions, but the staff and other families helped carry the burden, and the House allowed us to do the normal everyday things like cooking and washing, meaning those everyday chores that needed to be done could be done using the excellent facilities at the House.
After a long day at the hospital, our room would provide a space to discuss the day and have some down time. Our room was so comfortable and cosy. Being so close to the hospital allowed us to get a good night’s sleep knowing we could be with our son within minutes if needed.
I have to mention Takeaway Tuesday organised by the Royal Bank of Canada, which was something everyone at the House looked forward to. Coming back after a long day it was such a treat not to have to cook. This might seem such a small thing, but there were no restaurants open at this time and having a nice take away without worrying about the expense and cooking was such a treat.
During this time, I (Andrea) had my first Mother’s Day.
Hendrix was very poorly, but again, the Ronald McDonald House managed to put a smile on my face with a mummy mug and flowers. It was these things that make the House and the incredible staff there so special.
In May 2021, Hendrix was finally well enough to go home for the very first time.
But unfortunately, it was short-lived.
In January 2022, during a routine follow up surgery, his vocal cords were damaged. Hendrix spent the following seven months back in the Evelina London Children’s Hospital. We contacted the Ronald McDonald House as soon as we knew we needed to relocate again, and they offered us a room straight away. Not to battle with trains and traffic and be near our boy always was again incredible.
We came very close to losing him numerous times, but once again the amazing nurses, doctors and surgeons at the Evelina London Children’s Hospital worked so hard to keep him alive so we could see him smile again.
He spent over three months in intensive care where were unable to move him at times, but the staff did everything they could to help us through such a trying time.
In February 2022, Hendrix turned one. He had been in hospital almost a month and was very poorly. With careful planning and support from the team at the Ronald McDonald House, we were able to have a party from him in the Day Room at the House.
Hendrix arrived with a team of nurses, and we were so close to the hospital if needed. He was able to have the party he deserved and see his wider family.
In April 2022, Hendrix had to have a tracheostomy to save his life.
There were some very dark times during this stage and the House provided the home we desperately needed to come back to every night.
This time was also much harder than the first stay as we had also both returned to work. Thankfully, with the WiFi and Day Room we could work as needed, another incredible credit to the House.
Seven months was a very long time to be away from home and other family. Easter came along, Father’s Day, Pancake Day, all the dates when you are at home you would celebrate, but with our son fighting for his life it would have been easier to just forget these dates. But Ronald McDonald House always had a way to make them special. Easter Eggs at Easter for the families, pancake breakfasts, Father’s Day discounts on haircuts at the local salon… the list goes on. They continued to amaze us.
As summer approached Hendrix was becoming well enough to start coming out for days. With his tracheostomy we needed lots of training to get him home. This took considerable time and was very overwhelming, and we are fortunate that our families also wanted to be trained. With restrictions still in place at the hospital, the Ronald McDonald House once again stepped in and provided rooms for training so the trachy nurses could come to the House and meet with our families and run various sessions for them.
In August 2021 we were discharged, and it was such an incredible time. We went on our first family holiday which was amazing!
We will be eternally grateful to everyone at Ronald McDonald House Charities UK, without them we would not have survived such a dark time – it’s as simple as that.