Beauden’s Story
On Unit: 25th February 2021 – 4th May 2021
Gestation: 32 Weeks
In loving memory of Beauden Philip Turnbull ??
“Beauden arrived at 32 weeks to the day. A few days before that, we were told Beauden had a complication, which would need to be surgically repaired after birth. He’d be whisked off to NICU to hopefully grow stronger until he could undergo surgery. Beauden certainly confused the doctors when he arrived (all 3lbs, 11 ounces of him) and the previously seen complication was nowhere to be seen. For a few days, we thought Beauden had just decided to come early and we were looking forward to bringing a healthy baby home after a short stint on the unit.”
“Unfortunately, Beauden’s movements and breathing didn’t improve after his sedation had worn off and the doctors suspected Beauden might have a genetic condition. It was an agonising wait for the results to arrive. Beauden had Congenital Myotonic Dystrophy Type 1 (CDM1). This is an inherited condition and Beauden’s diagnosis led to the diagnosis of me (his mummy) and my wider family who later found out they were affected too. Already he had done so much for his family by bringing this to light.”
“For the next nine weeks, Beauden spent his time moving around the various bays in the red zone, his favourite was bay 4. His movements improved, he even weaned off the ventilator and was spending time on Non-Invasive Ventilation and high-flow oxygen. His cry was so quiet to begin with, but got louder each day. He loved coming out for cuddles with mummy and daddy and was always so settled in our arms. Daddy loved to read ‘The Snail and the Whale’ to him.”
“When Beauden reached term, we thought he’d be transferred to the Paediatric Intensive Care Unit to continue his journey, but he’d started to struggle. He was getting tired and wasn’t making the improvements the doctors needed to see. It was heart-breaking to learn he wasn’t going to survive. We got to do some really special things before he died, he met his grandparents, great-grandparents, uncles and aunties. He had a little naming ceremony and got to wear a baby-grow for the first time. We stayed with him on bay 4 until he died, he slept in-between us both, wrapped in his favourite blanket, being showered in kisses and cuddles before going peacefully in our arms.”
“We will never forget the loving care and support from the staff and Tiny Lives. They provided a lot of comfort for us throughout Beauden’s life. From parking permits to specialist physios to miniboos to a fresh cup of tea. We were given support every step of the way. The work they do allows you to be with your baby and spend time as a family, without worrying about anything else. We will be eternally grateful to the staff on the unit and for the support from Tiny Lives.”
“After Beauden died, our friends registered a star under his name, ‘Beauden Philip Turnbull’ in the constellation Ursa Minor. It means so much to us to know that our son’s name is shining brightly up there. We wanted to pass this forward to show how thankful we are to the staff on the unit who cared so lovingly for Beauden and gave him a home for his time here. We registered the star ‘NICU Night Light’ in the same constellation as Beauden’s to reflect our love and appreciation to those who looked after him.”
“To continue Beauden’s legacy of ‘doing for others’ and to support the causes that supported him and us, we set up Beauden Brave (beaudenbrave.org), which fundraises for the Tiny Lives Trust and Newcastle Hospitals Charity. Through this, even though his life was too short, his name, his story and his legacy continues, and that means everything to us.”
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Beauden’s parents, Richard and Magda launched Beauden Brave in 2021 and raised over £30,000 for the Tiny Lives Trust. In 2022, their goal is £50,000 to be shared between Tiny Lives and The Beauden Brave Fund administered by the Newcastle Hospitals Charity. Specifically in 2022, they are raising money to fund a role with the John Walton Muscular Dystrophy Research Centre (based in Newcastle at the Centre for Life) to design and deliver education to staff involved in the diagnosis and care of babies born with neuromuscular conditions, including Myotonic Dystrophy (more info: https://www.beaudenbrave.org/who-we-are).
We will keep this page up to date on the wonderful challenges and fundraising efforts of Beauden Brave throughout the year.
29th March 2022
Beauden’s Grandad is now on day 9 of tackling the 68 highest peaks in the Lake District (63 of which feature in England’s 68 highest peaks; you have to wait to peak 27 for the first one outside the Lakes!). Tim has 6 days left – keep going Tim! We’re rooting for you every step of the way! Here he is on day 5 joined by Beauden’s Daddy and friend Dug who had their weighted packs with them, training for Beauden’s Battle Peaks.
