Abigail Kay

Finley’s Story

Whilst in the womb, our gorgeous son, Finley Rain developed a de novo (not genetic) rare chromosome disorder - 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, 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. In many of the sleepless nights we spent in rotation, trying to feed Finley or administer his medication we felt alone and in despair. 

At 5 months old, our greatest fear became reality. Just as I was about to start feeding him, Finley stopped breathing. He turned completely green/blue and floppy all over. I tried patting his back, checked his throat for blockages but nothing. I could feel myself becoming hysterical. I screamed for Nick who rushed in from bed and he immediately began giving CPR. I phoned the ambulance in blind panic, pleading and wailing for their help. After what seemed like hours and by some small miracle, Nick managed to get Finley breathing again. We were able to keep him breathing with an oxygen machine that we had at home.  

The ambulance arrived and we were taken to hospital. Once in the NICU, the medical team found that he had secretion in his lungs from his constant reflux and this caused his lungs to collapse. He also has an infection of his kidney. He was put on antibiotics and kept in hospital again. 

The Doctors informed us that there was no way we could have seen this coming and that we, Finley’s parents, had done everything we should have done right. I thank god that Nick was able to stay calm enough to deliver CPR, he quite literally become his son’s hero. 

After another week in NICU, we were told by medical staff that the operations on Finley’s skull needed to commence as his brain stem was swelling and could be the cause of his breathing difficulties. Because of the financial implications of this and the severity of Finley’s needs, we were advised to fly Finley back to the UK but with a medical escort. 

Within the space of a week we packed up our lives, left our jobs, said goodbye to friends who became family, left everything we knew and had built over 5 years, and flew back to the UK - at an expense to us of over £50,000 plus the medical bills that had racked up again. Writing this now, it blows my mind how our network, our people, our loved ones, our friends came together and helped us spread our fundraising page so far and wide to raise the funds we needed. Truly overwhelmed and forever grateful.

Once back in the UK Finley was escorted and admitted straight into Ipswich Hospital. We spent two weeks with him there until finally we were told he could come home! We were camped in with my parents as we had no home our own now. We shared a beautiful day and evening together. Finley was able to meet all of his immediate family. He knew mummy and daddy were in a safe space surrounded with love. And that’s when he left us. At almost 6 months old, our beautiful boy had done all the fighting he could do. He didn’t want to be cut into or prodded at any longer. He simply had enough. Finley stopped breathing during his morning feed again and this time despite our best efforts, our Finny stayed sleeping. 

Finny is our absolute hero, our fair haired warrior. He showed us just how beautiful the world can be and to this day continues to make us better versions of ourselves. He shows up for us whenever we need him so we will always show up for him and all the babies taken too soon from their families. 

We love you always Finley Rain.

Mummy, Daddy and Jules xxx