Between Waves

Birth – Early Years 

•  Born at 39 weeks via planned C‑section (due to previous C‑section). Healthy normal weight 7lbs 11. And normal height.  

• Passed newborn hearing screening. 

•  No pregnancy or delivery complications. 

•  Breastfed immediately; later developed reflux and colic. 

•  Difficulty latching and preference for one breast → Tongue tie diagnosed and treated by Samantha Berry (private). 

•  Feeding remained one‑sided; slow interest in weaning, preferred breastfeeding. 

•  Breastfed until 3.5 years old. 

2023 

April 2023 – Sudden Onset Balance Problems/Ataxia 

•  19 April 2023 – Woody suddenly lost his balance overnight. No illness beforehand. 

•  21 April 2023 – GP visit after vomiting in highchair. 

•  GP diagnosed middle ear infection → 3 days of amoxicillin. 

•  Little improvement; Woody struggled to take medication. 

•  27 April 2023 (Thursday) – Returned to GP → Referred to A&E at QEQM hospital for paediatric assessment. 

Hospital Admission 

•  29 April 2023 – Admitted to hospital (Rainbow Ward). 

•  Bloods normal. 

•  Given IV strong antibiotics for 5 days to fight both bacterial and viral infection. 

•  Lumbar puncture, brain & spine MRI, genetic bloods → all normal. 

• MRI brain showed fluid mass near ears. 

•  During admission: Woody became puffy, drowsy, “out of it.” 

•  Balance improved after 5 days but never returned to previous normal. 

•  5 May 2023 – Discharged. 

Post‑Discharge – Severe Eye Symptoms 

•  5 May 2023 onward – Developed extreme light sensitivity, streaming eyes/nose, significant pain. Needed to sit in a dark room. 

Eye Appointments & Escalation 

•  Early May 2023 – Urgent eye appointment at William Harvey Hospital (Ashford). Yellow drops used to dilate pupils. Doctor did not examine eyes, dismissed concerns, diagnosed not conjunctivitis. Follow‑up booked for 9 June 2023. 

•  1 June 2023 – Complaint filed with PALS regarding lack of examination. 

Private Ophthalmology 

•  29 May 2023 – Private appointment with Dr Ghabra, Harley Street Eye Centre. 

•  Examined eyes properly. 

•  Prescribed Maxitrol drops 3× daily for 1 week. 

•  Helped temporarily; symptoms returned after stopping. 

Further Eye Clinic Visits 

•  3 June 2023 – Urgent eye clinic (self‑referral): 

•  Bilateral allergic conjunctivitis. 

•  9 June 2023 – William Harvey urgent eye clinic: 

•  Ocular hyperaemia, tarsal follicles, no limbal infiltrates, normal fundoscopy. 

•  29 June 2023 – Started homeopathy. 

•  3 July 2023 – Urgent eye centre: 

•  Redness, extreme photosensitivity. 

•  12 July 2023 – Seen again → More Maxitrol prescribed. 

August 2023 

•  4 August 2023 – Paediatric clinic: 

•  Using dexamethasone once daily + Opatanol BD. 

•  Mum asked about allergy testing. 

•  22 August 2023 – Audiology appointment booked. 

September 2023 

•  27 September 2023 – Follow‑up with Dr Emma Price (QEQM). 

October 2023 

•  3 October 2023 – Audiology appointment as noticed lack of hearing. 

•  Flat in both ears, inconclusive → referred to Dr Thomas. 

•  30 October 2023 – Genetic test result: normal array. 

November 2023 

•  1 November 2023 – Urgent eye clinic: 

•  Eyes extremely bad. 

•  4 November 2023 – Woody had blood tests. 

•  7 November 2023 – Urgent eye clinic: 

•  Redness, extreme photosensitivity, on/off steroids. 

• 8 November 2023 – Follow‑up with Dr Emma Price (QEQM). 

•  10 November 2023 – Saw Dr Lloyd Bender, consultant ophthalmologist (William Harvey). 

•  13 November 2023 – Seen at QEQM eye clinic. 

•  4 December 2023 – ENT report: 

•  Bilateral glue ear, adenoid enlargement. 

•  Awaiting hearing assessment by Dr Thomas. 

2024 

January 2024 

•  9 January 2024 – Woody discharged following left eye EUA surgery. 

•  Diagnosis: Left marginal keratitis. 

•  Surgeon: Dr Gavin. 

•  Improvement while on drops. 

February 

•  21 February 2024 – Ophthalmology clinic (Dr Gavin): 

•  Had stopped drops as advised on 7 Feb → eyes became very red after 1 week. 

•  Mum restarted ofloxacin + dexamethasone for 2 days → redness stopped. 

•  Plan: Hyloforte 3–4× daily, regular eyelid bathing. 

•  21 February 2024 – Ophthalmology clinic (Dr Gavin). 

•  20 February 2024 – Admitted to Rainbow Ward with complicated pneumonia. 

•  Extensive right‑sided consolidation. 

•  Treated with IV Co‑amoxiclav, oral Azithromycin/Clarithromycin and gentamycin  

February 2024 (continued) 

•  7 February 2024 – Diagnosis: Blepharitis (Dr Gavin). 

•  21 February 2024 – Ophthalmology clinic (Dr. Gavin). 

March 2024 

•  5 March 2024 – MRI Brain: shows fluid mass near ears. 

•  No acute intracranial event. 

•  Persistent inflammatory changes in middle ear & sinuses. 

•  Normal neurology, normal metabolic screen, normal rapid genetics (R14). 

•  18 March 2024 – Emergency eye appointment, William Harvey Hospital. 

•  27 March 2024 – Readmitted to rainbow ward due to high inflammatory markers & persistent pneumonia consolidation. 

• CT chest. Xray. Bloods.  

April 2024 

•  2 April 2024 – Telephone appointment with Clinical Nutrition & Dietetics. 

• Woodrow admitted to Evelina children’s hospital London for bronchoscopy. Was transferred to PICU.  

• Discharged from Evelina on 9.4.24. 

•  22 April 2024 – Speech & Language Therapy appointment. 

• Complaint made through pals – I believed Woodrow was prematurely discharged from rainbow ward following a repeat blood test a week after his discharge on the 27.2.24, I was told I would be called with a result and his CRP. However, I did not hear anything. I called the ward myself the next day as I was concerned my son Woody was still unwell and spoke to a doctor who informed me that his CRP had risen to 200 and to come back to the ward. He subsequently had a 3-week admission to rainbow ward and I felt that if I had not chased the result’s then it would have been a story. In response to this she acknowledged that they had made a mistake and steps have now been implemented on rainbow ward to prevent future mistakes being made. 

May 2024 

•  2 May 2024 – 

•  Neurology appointment at Evelina. 

•  Ophthalmology appointment at Sight & Sound with Mr William Moore. 

•  3 May 2024 – Telephone appointment with Dr Borg (FML eye drops). 

•  15 January 2024 (listed earlier but belongs here chronologically) – Green Banks Audiology: Satisfactory hearing in sound field. 

•  22 May 2024 – Evelina review: 

•  Recalled May 2023 ataxia admission. 

•  Unusual symptoms: unsteady gait, photophobia, staring episodes, facial puffiness. 

•  No cause found. 

•  Some improvement on steroid drops but symptoms disproportionate to exam findings. 

•  Referred to Mr Will Moore (GOSH) for second opinion. 

•  Iron deficiency anaemia, no improvement after 1 month oral iron. 

•  Complicated pneumonia history. 

•  Hearing concerns: not responding to name/loud noises. 

•  ENT (Oct 2023): bilateral glue ear, enlarged adenoids → possible grommets/ adenoidectomy. 

June 2024 

• 11 June 2024 – Clinic letter (Dr Emma Price): 

• Aspiration causing prolonged pneumonia. 

• Bronchoscopy: Haemophilus influenzae & Strep pneumoniae. 

• Persistent photophobia → mild keratitis, controlled with steroids. 

• NGT feeding due to aspiration & poor growth. 

• Iron deficiency anaemia → IV iron given. 

• Developmental concerns: no recognisable words. 

• Height 89.5 cm, weight 11.4 kg. 

• 17 June 2024 – Green Banks Audiology: Satisfactory hearing in sound field. 

• 17 June 2024 – Audiology clinic appointment. 

July 2024 

• 3 July 2024 – Telephone appointment with Dr Borg (ophthalmology). 

August 2024  

• Received an apology from Sarah Hayes, chief nursing and midwifery officer in response to my complaint made through pals.  

September 2024 

• 2 September 2024 – Evelina follow‑up phone appointment. 

• 24 September 2024 – Urgent eye service, William Harvey Hospital: 

• Severe pain & photophobia, worse in right eye. 

• Intraocular pressure NOT recorded. 

• 25 September 2024 – Dr P. Panagiotou (Paediatric Gastroenterology): 

• Plan: admission for PH impedance study, oximetry/capnography, . 

October 2024 

• 10 October 2024 – Cornea clinic: 

• Mum concerned Woody has been on steroids over a year. 

• Light sensitivity worsens when weaning. 

• Intraocular pressure not recorded. 

November 2024 

• 6 November 2024 – Follow‑up with Dr Emma Price. 

• November 2024 bloods – 

• Total IgE: 6 

• Negative specific IgE (cat, dog, rape pollen, mould mix) 

• Iron 4.2, transferrin saturation 5%, ferritin 19 

• Hb 103, WCC 9, platelets 501, MCV 70.9 

• No sensitisation → allergic cause less likely. 

December 2024 

• 11 December 2024 – Persistent photophobia: 

• On Verkazia 4× daily, dexamethasone during flares, sodium hyaluronate. 

• Follow‑up in 3 months. 

2025 

January 2025 

• 2 January 2025 – GOSH Ophthalmology appointment. 

• 16 January 2025 – Speech & Language Therapy. 

• 30 January 2025 – Speech & Language Therapy. 

March 2025 

• 3 March 2025 – Community Child Health Consultant: 

• Delayed speech & language. 

• Persistent photophobia from vernal keratoconjunctivitis. 

• Previous aspiration pneumonia requiring NG tube. 

• 27 March 2025 – Dr William Moore (Ophthalmology): 

• Diagnosis: Vernal Keratoconjunctivitis with limbal & corneal involvement. 

• Treatment: Verkazia 4× daily + dexamethasone during flares. 

May 2025 

• Private hearing appointment booked through Kent Hearing.  

• Provisional diagnosis: Middle ear congestion (glue ear). Incomplete testing. 

July 2025 

• 7^th july spent the night up a&e with woody as he couldnt put his legs down and was in a lot of pain.  

• Found blood in woodys nappy where his willy sat on 11^th july and got him a GP appointment that day. Prescribed him some antibiotics and cream for his penis. Had blood in his urine but no nitrates – likely a sore penis. 

• Had another admission to rainbow ward with sore legs and limping – diagnosed with viral myositis.  

• 29 July 2025 – Audiology hearing test. 

September 2025 

• 3 September 2025 – Referred for BAHA band due to persistent glue ear since age 1 and no speech. 

November 2025 

• Audiology hearing test – 10 November 2025. 

• 19 November 2025 – Endocrinology appointment. 

December 2025 

• 4 December 2025 – Audiology hearing test: 

• Fast‑tracked for grommets + ABR test due to repeated inconclusive tests and significant bilateral hearing loss. 

2026 

• 3.2.26 – Pre assessment for Grommets and ABR test  

• Had tried phoning multiple times to arrange blood test for Woody but could not get through. Left multiple voicemails. 

After my son’s first hospital admission in April 2023, he was never the same child again. Before that point, Woody was a healthy, happy baby with no developmental concerns. I have photos and videos that clearly show how well he was before this admission, and how dramatically things changed afterwards. 

When he was admitted to Rainbow Ward, his blood tests were normal and he wasn’t showing signs of being seriously unwell beyond the sudden loss of balance, which had been attributed to a middle ear infection. Despite this, he received very strong intravenous antibiotics, a lumbar puncture, and several invasive investigations. 

From my perspective as his mother, I believe these interventions were far more aggressive than what his presentation seemed to warrant at the time. He was exclusively breastfed, unvaccinated (as I had planned to delay them), and had never been exposed to anything like this before. I feel that the combination of powerful antibiotics and invasive procedures overwhelmed his system, and that his body struggled to cope with the sudden intensity of the treatment. 

The child who came home after that admission was not the same child I took into hospital. Since then, he has faced a long list of health issues that simply did not exist beforehand. As his mother, I cannot ignore the timing or the dramatic change in his wellbeing immediately following that hospital stay. 

I’d also like to add the symptoms woodrow had.

Woody exclusively breastfed on one side. He had latching issues, would struggle to feed even after having the tongue tie removal.
He always sounded congested and his breathing was always noted to be heavy and a little fast.
No speech – no words
No hearing, didnt respond to name or loud noises after 1st birthday.
Flare ups with his eyes at least twice a month.
Rapid breathing – this is a symptom we always mentioned time and time again. His breathing always appeared to be a little faster than normal, he would breathe heavily and snore.
When he was poorly, he would sweat, especially from his head which would soak the sheets. I mentioned this a couple of times to his consultant dr Emma Price and she told me she didnt know why and she did not question it further.
He had an iron transfusion because his iron was very low and was not increasing. No mention of looking at his heart ever. Despite having a serious lack of energy mentioned multiple times.
He wasn’t growing normally like he seemed to be before his first birthday. He didn’t take much interested in food at first, although he did still graze, but he did like to breastfeed a lot. Just before his 2nd birthday when he was at the Evelina for a broncoscopy he ended up in PICU. I remember mentioning looking at his heart but I’m not sure if they did? After discharge from the Evelina he had an NG tube for around 6 months.
Following the ng tube and stopping breastfeeding in summer 2025, Woodrow’s appetite seem to increase, he seemed to be constantly hungry but didnt seem to be growing or putting on weight despite how much he ate. This was mentioned plenty of times to multiple professionals in his care.
People throughout woodrows life, professionals and friends/family/nursery, would often tell me woody looked tired.
Woodrow didnt run around like the average boy of his age. Like he didnt have the energy to – again this was mentioned a few times, especially to his consultant.
Woodrow seemed to be affected by persistent infections; he would always take a lot longer to get over them compared to my daughter. He always seemed to suffer especially with viral infections.
I would like to understand why, despite Woodrow’s ongoing symptoms and multiple hospital visits and appointments, investigating his heart was never considered.
I appreciate that we do not yet know what caused my son’s sudden death, and I understand the post mortem results are still pending. However, after reviewing his medical history, including the many letters, appointments and repeated concerns throughout his life, I feel it is important to ask why a cardiac cause was never explored as a possible explanation for his symptoms.