Abigail Kay

Finley Rain’s Story

In Bangkok, on the 23rd August 2022, Finley Rain Brian Richard Phillips was born and our lives changed forever. He brought nothing but joy and love into this world. He brought families together, he turned strangers into friends and he showed us just how exceptionally kind and generous humans can be. 

Whilst in the womb, our gorgeous son, Finley developed a rare chromosome disorder, not passed down but by total chance - a duplication of chromosome 14, which resulted in him being diagnosed with a number of significant abnormalities, including but not limited to the following: Craniosynostosis (early skull fusion), two holes in his heart; severe hearing loss; club feet and hands and an inability to gain weight. During a routine scan at 26 weeks we learned that Finley had physical deformities to his hands and feet but medical staff were unable to determine the cause or predict the extent of his abnormalities until his birth. Just a few days after he was born, we learnt that Finley would not only face profound developmental challenges and delays, but also experience further issues related to his particular disorder. Unfortunately, as every chromosome disorder is unique to the individual, no one could predict exactly what the future would hold for Finley. 

Each day presented numerous logistical difficulties in caring for our son, which we were desperate to get right so that Finley received the best possible care and love he so deserved. In addition, his needs necessitated constant medical intervention – scans, procedures and operations that culminated in staggering medical bills. We lived and worked in Thailand at the time, where healthcare is not free. Whilst my teaching position provided good healthcare insurance unbeknown to us, until after our son was born, no insurance companies in Thailand cover birth defects and once fully aware of his condition, we were unable to secure a policy, leaving us facing a future wracked with uncertainty and bills we did not foresee, and couldn’t meet. To be honest, we never ever imagined the scenario and we were raw with the pain of being unable to find the financial support to help our son live his best possible life. In many of the sleepless nights we spent in rotation, trying to feed Finley or administer his medication we felt alone and in despair. We prayed for help and we prayed too for all parents in Thailand who find themselves in the same situation. Surely, in this day and age, with inclusivity carrying such a powerful message, a child born with a birth defect should have the right to be supported in a positive and supportive medical system. No one deserves to encounter financial discrimination at the most challenging time of their life, simply because nature has thrown a curve ball into the mix. 

Finley needed to have a gastric tube fitted as his ability to feed and supress vomiting was negligible. It was vital that he gain weight so that he could withstand the first of many operations on his skull to relieve the pressure forming on his brain.

On January 21st 2023 during his morning feed, Finley stopped breathing. Nick (Finley’s daddy) was able to resuscitate him and after just 4 months at home with us, Finley was readmitted to hospital. Nick and I spent every day by his side for 2 weeks until we were advised that we had to get Finley back to the UK. Treatment needed to begin on Finley’s skull but the costs would be astronomical so it was decided that we must get a medically escorted flight to return to the UK and the NHS. Miraculously we managed to raise the £50,000 this would cost. (We will NEVER forget the support and generosity shown to us…it still continues to blow our minds!)

We packed up 5 years of our lives within a week, left our jobs and friends in Thailand to get Finley the care he desperately needed and deserved. 

After landing in the UK, Finley spent two weeks in Ipswich hospital where we were relieved to hear action plans and understand further the treatments Finley would need. On Saturday 18th February, despite catching a nasty cold, Finley was discharged from hospital with a nasal feeding tube, oxygen tanks and new meds. We were so thrilled to be able to have our boy back in our loving arms, back at home with his family. We had a wonderful afternoon and evening together. On Sunday 19th February 2023, I woke to feed Finley as normal. The feed began well but before long Finley stopped breathing again. We were rushed to hospital but this time Finley stayed sleeping. Finley Rain was the most brave, courageous and most charming baby boy. He knew exactly what his purpose here with us was. He will always have and be in our hearts. Finley got Nick and I back to the UK, back into the arms of our families and friends. He’d said hello and had cuddles with the immediate family he’d still not met. He spent one last night at home with his mummy and daddy. But that was enough for our beautiful boy. And now, despite our daily despair, we know that Finley is now at peace, with us still everyday.

Finley RBR Phillips

23/08/22-19/02/23