Welcome to The Rose Tinted Mum! My name is Laura Twitchen and I am the writer of this unique blog, which shares my personal experiences of being a hospital mum. Within many of the blog entries I talk about my little sidekick and partner in crime Billy, the main star and inspiration of this blog.
Billy, my beautiful son, entered the world in 2017 with a bang. In his short life he has experienced more trauma than most would in a lifetime. His outwardly happy exterior and his strength and determination to fight whatever life throws at him, has touched many within our community. Over time his story has also seemed to create a ripple effect across a wider community. Billy has created hope when times are dark and enforced a culture that life is too short to not live.
For me, this little warrior has been my driving force and motivation to stay strong. Without his infectious smile and his tiny hand holding mine, my inner soul would have been dead years ago. It is remarkable really that true love and purpose can keep the most vulnerable of individuals safe at times from their own inner thoughts, including mine. Watching Billy deteriorate in front of my eyes was incredibly chilling and humbling, and unfortunately there is no way of erasing those memories which linger in my subconscious. The scary thing is that sometimes out of nowhere these lingering subconscious thoughts can erupt and influence my actions and feelings in everyday life. Over time I have come to realise that hiding these inner traumas in my subconscious from the outside world meant losing a bit of me. So, writing became my therapy an odd choice for a dyslexic. After being encouraged by others I started to own all my suppressed feelings and threw them at the paper with great force. Sometimes the emotions run wild when I write, to the point that I find myself sobbing, inwardly screaming, sometimes outwardly laughing, but by doing this I can let go of the pent-up feelings trapped inside me. Writing has led me to a place of self-discovery and at times I have had to face my worst demons. But by doing this I have created a knowingness, that whatever the world throws at me I will survive and have mental resilience to be a better mum.
Throughout this journey I have truly been helped by my other love, gardening, and food preservation. I was introduced to this very exciting world by my late father as a child. Growing up we had a big garden at home where over 50% was dedicated to food production. When our family moved from the Midlands to the South Coast, we decided a family allotment would be a good meeting place for us all to get our gardening fix. It is hard to believe that at times I would forsake the allotment and come home from the hospital after a hard week and lock the door to the outside world, only going out to walk our beloved dog, Scrumpy. But, for our family gardening was a way of life which creeped into many conversations. So hard to ignore, especially when it seemed to call me from all angles. As Billy became more ill, I found that I increasingly needed the allotment for my own sanity. There is something quite satisfying about picking a fight with the bed that needs digging over. When I was a child, I began to realise that the most special thing about gardening was the time it gave me to think. This along with a mechanical element of movement focused me to burn off pent up energy. So, when Billy was ill and I was at home alone, the allotment gave me the purpose I needed to get up in the mornings.
Behind most success stories there is always a significant other, not necessarily a lover, but in my case it is. This amazing man has had many hats to juggle over the years and Billy and I are truly grateful for his endless support and protection. Alec, your one in a million and I’m so happy we navigated this journey together.
I hope by creating this blog and sharing my experiences that it will offer comfort to others within this hidden world. Most people are touched by some type of illness throughout their life, and despite its title, the experiences of treatment, hospitalisations or being a supporter are often similar. I hope the blog will share an insight of this unwanted but needed world and offers a friend that you can connect with at the end of a hard day.
Remember you may not feel strong but you are
Love
The Rose Tinted Mum
Billy’s Hospital story
6th October 2017, Billy was born by an emergency caesarean section due to a decline in heart rate after and epidural, once delivered he made a full recovery and was discharge after 48 hours.
24th October 2017 (am), Billy was sent to the Southampton General Hospital (SGH) by the Health Visitor for a split Bilirubin blood test due to concerns that is body colour was still jaundice.
24th October 2017 (pm), Billy was admitted to Paediatric Assessment Unit (PAU) within SGH. The split Bilirubin test had predominantly conjugated Bilirubin which would indicate liver failure.
26th October 2017, Billy was transferred to Kings College Hospital (KCH) as 1 of 3 centres of excellence within the UK for Childhood Liver Disease for specialist advice. After further tests it was confirmed that Billy had Biliary Atresia (liver failure).
Biliary Atresia is a blockage in the ducts [tubes] that carry bile from the liver to the gallbladder. If left untreated, many young patients would not live past their first years of life and often a liver transplant is the only option for survival.
7th November 2017, Billy had a Kasai procedure to try and repair the damaged bile ducts. After 6 days of recovery Billy was sent home, but it was felt that the procedure was not successful as the jaundice was still present.
Kasai is an operation to replace the blocked bile duct with a segment of his small intestine.
14th November, Billy was presented at A&E at SGH with abdominal distention, pale stools and general unwellness. After discussing with KCH it was agreed that Billy needed an emergency move there for further surgery due to a possibility of an anastomotic leak. This was undertaken on the 15th November and then he was discharged home on the 27th November 2017.
30th December 2017, Billy was admitted to PAU with significant dehydration with electrolyte derangement and metabolic acidosis, a little later he was moved to Paediatric Intensive Care Unit (PICU) for further monitoring. Over the next 9 months Billy became a resident of G4 ward SGH and KCH, with brief moments at home.
February 2018, Billy’s body started to give up and he could no longer keep the constant infections at bay, so the decision was made to register Billy on the national transplant list.
Throughout these 9 months Billy was seen as high risk of catching infections and due to needing to be well for transplant he was isolated within an individual room for all this time with limited visitors.
July 2018, Billy continued to battle daily infection and complications, whilst anxiously awaiting a donor liver, we received a call that no parents wants. Billy had stopped breathing late a night, with quick thinking by the medical staff on shift they managed to revive him and move him to PICU to monitor this unexpected decline.
At the end of July 2018, it was felt by his over all team that it would be best and safer to move Billy to Kings to await his transplant.
28th August 2018, we received information that there maybe a valued liver for Billy. After a very long day, Billy went into theatre just after 12am and received his gift of life on the 29th. Billy transplant was deemed as a success and he returned home 2 weeks after.
Over the next 7 months Billy was relatively well but needed support to maintain his magnesium levels through regular IV infusions (around 1 a week) and was admitted on a couple of occasions with respiratory infections, rashes, sepsis, and a biopsy to rule out rejection.
April 2019, Billy became distressed at night at home and Billys skin had turned yellow once again. Billy was rushed back to Southampton General Hospital where tests discovered that he had a blockage in his bile ducts. After 10 months of trying stents and balloons to open the ducts, it was agreed that Billy needed a more forceful approach.
February 2020, Billy underwent reconstruction surgery to unblock his bile ducts. This operation was a success and we returned home once again after 10 days recovery.
March 2020, Covid hit and we where once again isolated for Billy protection, he had been categorised as high risk.
14th May 2020, Billy was admitted to hospital by ambulance, Billy had woken up with swelling to the lips and an increased work in breathing. Along with Biliary Atresia Billy has a high number of allergies (egg, dairy, wheat, and soya) so it was suspected anaphylactic shock. The paramedics administered adrenaline at home, but this did not bring down the swelling. Over the next 4 days the swelling continued to get worse and he started to drool significantly. Also, Billy’s skin around his mouth and inside became blistered.
17th May 2020, Billy’s airway was restricted to intubation grade 4. This is the worst on the scale from 1-4, you cannot see in or down due to significant swelling. On this day Billy was very lucky that ENT was able to put a ventilation tube in and did not have to look at more invasive ways of supporting him. Due to his current needs Billy was moved to PICU and further tests continued to figure out what was causing the swelling.
19th May 2020, Billy was diagnosed with a rare form of cancer called Post Transplant Lymphoproliferative Disorder (PTLD) stage 3. It was agreed that Billy needed treatment through the form of Rituximab antibody therapy and Chemotherapy. Also, Billy’s immunosuppressive drug was stopped to try and reduce the over production of the B cells which was helping the growth of the cancer.
Post-transplant Lymphoproliferative Disorder [PTLD Cancer] can develop when transplant patients, who are taking immunosuppressive drugs to prevent the rejection of the transplanted organ, are more susceptible to certain viruses.
8th June 2020, Billy was extubated and put on to a Non-Invasive Ventilator (NIV) over the next couple of weeks, a gradual weaning programme was put in place to get him off the ventilator. The induced coma and the lack of food had taken its toll on his body to the point he could not sit up, left his head, or move his arms or legs independently. A therapy plan was put in place to promote Billy strength and independency in all areas, the plan consisted of SALT, OT, Physios, and detritions.
August 2020, Billy was in remission from cancer and sent home with a community team of therapist and once again we were put in isolation.
February 2021, Billy started walking 😊
September 2021, Billy was granted an Education, Health, and Care Plan (EHCP) with a place at a speech and language unit.
October 2021, Billy was assessed by respiratory due to having a recurring chest infections and breathing difficulties. On previous x-ray they had been many collapsed lungs, patchy air way shadows and peri-bronchial wall thickening. It was agreed physio and medication action was needed for the foreseeable future to see if the damage could be improved.
21st January 2022, Initial assessment with Endocrine due to his growth being below the recommended centiles for his age. Within this assessment they found that Billy’s growth hormones are all in normal range, but his bone growth was delayed. The bones within his hand indicate he was 1 year and 6 months of age, which is significant lower to his chronological age of 4 years and 3 months.
August 2022, Respiratory admitted Billy for a 2 week stay to investigate the wet cough further. While he was in, he was given 2 weeks of antibiotics and intense physiotherapy. Also, Billy underwent: –
- Fluoroscope (swallowing assessment)- Billy was diagnosed with stage 4 Dysphagia.
- ENT to check the working mechanical of the Throat- No sign of damage.
- MRI brain scan undertaken by Neuro to see if he had any structural abnormalities of the brain- Billy brain was normally developed.
- Neuro also suggested genetic testing, blood was taken from Billy and both parents- Ongoing
- Referral to Gastro to investigated GORD and Reflux.
- Referral to Cleft team to check the composition of the mouth.
Billy was sent home on thickened fluids, after 2 weeks he was changed over to boiled cooled water to promote better fluid intake. Also, to avoid all wet food that went custard consistency
September 2022, Billy started school.
September 2022, started to wean steroids on the request of Endocrine to promote good growth. Billy was put on steroids to protect his transplanted liver. Since the weaning, Billy has started to grown and catch up with his peers.
7th September 2022, initial assessment with Spires Cleft Centre in Salisbury to establish whether there could be problem with the structure or function of Billy’s soft palate. No damage detected.
November 2022, Billy underwent a upper GI endoscopy/ biopsy by gastro, which indicated GORD and reflux. Billy started Omeprazole medication.
May 2023, the physiotherapist indicated that Billy has hypermobility.
May 2023, CT scan undertaken on the request of Respiratory, the lung damage has improved but the left middle lobe continues to be collapsed.
September 2023, Billy had a second Fluoroscope which indicated significant improvement.
We Support
Organ Donation
Ronald McDonald Houses
Children’s Liver Disease Foundation
Starlight Children’s Foundations
Transplant Sport
The British Transplant Games
Southampton Hospitals Charity UK
King’s College Hospital Charity
Sophie’s Legacy
Friends of PICU at Southampton University Hospital
Share Your Wishes
Rainbow Trust
Naomi House & Jacksplace
Young Lives vs Cancer
Special Dates
National Organ Donor Day- 14th February
Rare Disease Day- 29th February
Big Yellow Friday (CLDF)- March
World Liver Day- 19th April
Undiagnosed Children’s Day- 26th April
World Transplant Day- 6th June
International Day of Play- 11th June
Carers Week- 10th -16th June
The Transplant Games- first weekend in August
World Organ Donation Day- 13th August
Organ Donation Week- September
Go Gold for Childhood Cancer- September
National Biliary Atresia Awareness Day- 1st December
The Rose Tinted mum 