Huxley Tate Birchnall

We are Aimee and Luke, Huxley Tate Birchnall’s parents. We are raising money for Rainbows and Great Ormond Street Hospital.

Huxley was born on the 8-3-23. Initially Huxley was born and appeared perfect. During his four hour observation checks, something that not all hospitals even do on newborns, it was discovered his O2 levels and temperature were slightly low. This resulted in him being sent to the NICU for more checks. After lots of checks, scans, x-rays and meetings the staff at LRI soon found out that Huxley’s heart was enlarged and they suspected he had a rare Vein of Galen Malformation (VGM), something only 1 in a million babies are born with a year in the UK.

Just 14 hours after Huxley was born we were in an ambulance travelling to GOSH. GOSH are the only hospital that support children with VGM currently in England. During our time at GOSH we were told that Huxley’s condition was one of the worst VGM cases they had seen and that there was nothing they could do to improve his quality of life- he had hours/ days left with us. The most heartbreaking news we’ve ever been told.

During our time at GOSH we were supported by so many wonderful staff. Our key nurses Charlotte and Kaitlin were with us every step of the way. They not only looked after Huxley, but they supported us as a family, explained everything to us, sat with us during consultation meeting, made us laugh and brought us many many rounds of toast! GOSH not only supported the three of us but our daughter Thea too. They organised a play therapist and a memory box to help her understand what was going on and for us to make some precious memories with Huxley as a family of four. We made canvas prints, clay moulds, ink prints and they even organised a photographer to take some family photos for us.

Our family liaison officer, Katie has been nothing but outstanding. She has organised for Huxley to have casts done of his hands and feet, transport to get Huxley back home and even found us a space at Rainbows. She continues to check in with us a couple times a week.

After Huxley died on the 11-3-23 we were transferred to rainbows on the 13-3-23. Rainbows had a special bedroom that Huxley could stay in for a week, meaning we got some much needed extra time with our little man. Family members who hadn’t already met Huxley got to and Rainbows had helped us decorate his room to feel homely and with lots of green things! They provided us with a family support worker to help us with explaining what had happened to Thea, let Thea run wild in soft play and the craft room and provided us with food during our time there. Rainbows continue to support us with planning and arranging Huxleys funeral and further support with Thea.

Without the amazing staff and support at Rainbows and GOSH this journey would have been so much harder. Us and Huxley are so lucky to have had such amazing support and staff looking after us and feel it’s only right we give them something back. We would love to raise money for the two charities to say thankyou for everything and to support us to continue Huxleys legacy and memory!