What they have in common

Sadly, each child is living with pain.
It is so dire that parents are left with no alternative than to forgo their child’s privacy & portray the sorry state of affairs here publicly for the Irish nation to see, in the hope that they will support us in calling for a real solution for our children.

Spina Bifida and/or Hydrocephalus

Each child was born with Spina Bifida and/or Hydrocephalus.  They are all patients of Children's Health Ireland (CHI)
​Each child is unique but they all need regular & repeated monitoring of their kidneys, bones & eyes to avoid them becoming ill.
​This is not occurring.

Medical Professionals

In Ireland we have world-renowned Medical professionals with extensive expertise in Spina Bifida/Hydrocephalus care.
We hold the medical team who are charged with the provision of care to our children with complex needs in the highest of esteem. 

Health care access

The issue is access to Medical professionals. A 2014 report advised that there were major advances to be made to a grossly under-resourced Spina Bifida Paediatric service.
​Many of the recommendations did not materialise & the result of this is evident below in our children's stories.

Our Children's Stories

1. Adam 
💔 Waited 4 years for Scoliosis surgery

💔Due to delay now needs additional surgeries
to legs & feet

🆘Hasn’t seen a Urologist
​in 4 years

💔Currently has no wheelchair
Picture
Name
2. TJ
💔Waited so long for
​Scoliosis surgery is now inoperable

💔Has had major detrimental effect on mobility
​
​⛔Does not have access to a Spina Bifida Clinic
3. Harvey
⏳Waiting for Urgent Orthopaedic review.

⏳Both hips are dislocated, both knees are fixed & unable to straighten, Scoliosis worsening

​⏳Waiting for Urology surgery. 
4. Eddie
💔Waited 2 years for Orthopaedic foot surgery
​
💔Feet were completely overlapping rubbing together causing sores & bleeding

⏳Waiting on further Orthopaedic surgery​
5. Paddy
⏳ Waiting on urgent Scoliosis surgery

💔Grave concerns that as growth speeds up in teenage years will become inoperable
​
⏳Waiting on Orthopaedic leg surgery

💔Due to delays is losing the ability to self-propel his wheelchair
6. Rosie 
💔Waited 2.5 years for major Orthopaedic surgery
​
💔Given surgery date twice, fasted, in hospital gown, cancelled again

🆘Had to present to A+E in extreme distress with hips fully dislocated & skin breakdown on legs.
​Waited a further 14 days, received surgery.
7.Hollie 
💔Waited years for Orthopaedic surgery, occurred in Sept 2021
​
🚷 Due to long delays no longer has the ability to walk 

⏳ Waiting for Physiotherapy to avoid even more surgery
8. Hannah
💔Waited so long for Orthopaedic surgery is now inoperable & can no longer sit unaided.
​
⏳Waiting for Urology surgery to preserve right kidney, left kidney irreparably damaged.​
9. Sophie
​⏳Waiting for Urgent Orthopaedic surgery 

💔Waited 2 years for "annual" Spina Bifida Clinic

​💔Waited 2 years to see Consultant Urologist
10. Cillian
💔Waited 3 years to have both dislocated hips operated on

❌Was never given surgical date
​
🆘Became very ill, vomiting with pain. Rushed to ED received surgery
11. Jamie
​⛔Does not have access to a Spina Bifida Clinic

⛔No Urology consultant
​
⛔No Neurosurgeon 

🆘Extreme concern over kidneys due to lack of care
12. Connor F
​💔Waited 3 years for Orthopaedic foot surgery

🚷🚳Pain was so severe he went from walking & cycling to full time wheelchair user

💔Skin on foot developed sores & bled
13. Emily
⏳Waiting 3 years on Orthopaedic surgery

💔Waiting so long now needs 3 separate operations & not just 1

💔Waited 2 years for kidney ultra sound 
14.Buachaill C
💔Waited 3 years for foot operation
​
🆘Had to present to ED with pain from bleeding foot sores. 

⏳Waiting 3 years for "annual" Spina Bifida Clinic

⏳Waiting 3 years to see Consultant Urologist
15. Ryan
​⏳Waiting 2.5 years for Orthopaedic Foot Surgery

💔Waiting so long now needs 3 separate operations & potentially more

​💔Skin on feet having recurrent pressure sores, skin breakdown & at risk of infection
16. Conor P
💔Waited a year for Spinal surgery due to delay had to endure 45 days in halo traction prior to receiving

💔While waiting for hip surgery, pain was so intense had prolonged seizure & vomiting
​
🆘Rushed to A+E in an ambulance admitted for management, waited a further 16 days then received surgery.
17. Seán
⏳Waiting 3 years for "annual" Spina Bifida Clinic

⏳Waiting 3 years to see Consultant Urologist
​
💔Had leg sores & pain waiting for foot surgery ​
18. Lucy
⏳Waiting 2 years for Orthopaedic Foot Surgery

💔Waiting so long now needs 2 surgery to Foot & Knee 
​
​⏳Waiting 4 years for Ophthalmology review 
​
19. Buachaill G
💔No Consultant Urology care for a decade, now has irreversible kidney disease

🆘Needs Orthopaedic surgery has no Consultant

⛔Never seen by Ophthalmologist 
​
​⛔Does not have access to a Spina Bifida Clinic
20. Cian
💔 Waited 1.5 years for emergency Spinal surgery.

⏳ Waiting 2 years to see Ophthalmologist ​
21. Freya
⏳Waiting on urgent Orthopaedic Foot surgery
​
​💔If Foot surgery doesn't occur soon will need 2 surgeries to Foot and Spine 
​
⏳Waiting to see Ophthalmologist
22. Aoife
⏳Waiting 3 years for "annual" Spina Bifida clinic

⏳Waiting 3 years to see Consultant Urologist
​
​💔Waited 14 months for Orthopaedic surgery
23. Brianna
⏳Waiting for Scoliosis surgery

 ⏳Waiting for Orthopaedic leg surgery
​
⏳Waiting for Urology surgery

⌛Waiting 4 years to see Ophthalmologist​
24. Shane
⏳Waiting for Orthopaedic foot surgery

​💔Waited 2 years for "annual" Spina Bifida Clinic

​💔Waited 2 years to see Consultant Urologist
25. Ava
⏳Waiting over 1.5 years for foot surgery
​
⏳Waiting 3 years for "annual" Spina Bifida Clinic

⏳Waiting 3 years to see Consultant Urologist
26. Buachaill O
⏳Waiting for Orthopaedic surgery
​
💔Receives no Physiotherapy

💔Waited 2.5 years for "annual" Spina Bifida Clinic
27. Keelan
⏳Waiting for Orthopaedic foot surgery

💔Is permanently in a leg cast while waiting for surgery

💔Has developed sores on leg that cause pain & need dressings 
28. ​Alex
💔Waited 2 years for "annual" Spina Bifida Clinic

​💔Waited 2 years to see Consultant Urologist

⏳Waiting for new wheelchair assessment that may prevent surgery
29. Xi Tong
⏳Waiting on Orthopaedic foot surgery

💔Due to delays may now need foot & knee surgery

🚷Losing the ability to walk & may become fulltime wheelchair user
​
⏳Waiting on urology surgery 
30. Cailín B
💔Waited 3 years for Orthopaedic surgery due to long delay had to have 2 surgeries instead of 1 & extensive hospital stay

💔Had months of extreme pain which has had a disastrous impact on mental health, in severe psychological distress

⏳Waiting 2 years for "annual" Spina Bifida clinic
31. Tyler
⏳ Waiting 3 years for hip surgery 
​
💔Delay in surgery has caused a major decline in mobility  
32. James
​⏳Waiting 2 years on Scoliosis surgery 

⏳Waiting 2 years on Kyphosis surgery

​💔Has sores & wounds on back due to position of spine
33. Abbierose
⏳Waiting 3 years for foot & knee surgery
​
​💔Knee is now permanently bent inwards

🚷Can no longer wear leg splint so unable to walk while waiting for surgery

⏳ Waiting 2 years for "annual" Spina Bifida clinic
34. Thomas
💔Delays in surgery severely limited ability to build muscle mass for standing. 
Full Time wheelchair user now. 

💔Waited 6 years to see an Ophthalmologist​
35. ​Juliana
💔Had reduced mobility while waiting for surgery

🆘Developed swelling on knees & back pain while waiting for surgery had to attend ED

💔More extensive Orthopaedic surgery required due to deterioration while waiting
36. Buachaill L
​⏳Waiting 2 years for Orthopaedic leg & foot surgery
 
💔Has sores on legs & feet due to bone position
​
🚷Losing the ability to walk & becoming increasingly wheelchair dependent
37. Buachaill J
⏳Waiting for Orthopaedic surgery 

💔Waited 2 years for "annual" Spina Bifida Clinic
​
💔Waited 2 years to see Consultant Urologist
38. Lexi
​⏳Waiting on Orthopaedic foot surgery 

💔Feet extremely affected difficulty getting shoes on

💔Only seen once by Ophthalmology in 11 years

💔Was not even supplied with own wheelchair for 1st day of school
39. Buachaill F
⏳Waiting on Orthopaedic surgery
.
​⏳Waiting 3 years to see Ophthalmology
40. Abbie
⏳Waiting 4 years for hip operation to prevent Arthritis
​
💔Has much discomfort and pain

🚷Losing the ability to walk & becoming increasingly wheelchair dependent
41. Madison
​⏳​Waiting on hip surgery for 2 years

⏳Waiting on leg lengthening surgery for 2 years 

💔Unable to stand due to pain
​
💔Unable to wear supportive leg splints due to sores 
42. Ava Grace
​⏳Waiting on Urology operation for 2 years (only has 1 working kidney)

⏳Waiting 3 years for Orthopaedic surgery on hips, knees & feet

⏳Waiting over 2 years to see Ophthalmology
43. Alicia
​⏳Waiting on Scoliosis surgery for 2 years

💔Has outgrown wheelchair. Funding repeatedly refused until Scoliosis surgery complete
44. Oisín
⏳Waiting 2 years for "annual" Spina Bifida Clinic
​
💔Waited 3 years for Orthopaedic surgery on his hips & feet

💔Had recurrent sores and breakdown on skin of feet & ankles
45. Cailín E
​💔Previously had to travel to Great Ormond St. in UK as waiting list in Ireland so long

​🆘Needs Orthopaedic surgery to correct foot drop and foot turning in.

⛔​Has no Orthopaedic Consultant
46. ​Aurora
🆘Has never seen an Orthopaedic surgeon
​
⏳Waiting since birth still no date
47. Michael
​⏳Waiting 3 years for Urology review

⏳Waiting 5 years to be seen by Physiotherapist

💔Had Orthopaedic surgery with no follow up plan
48. Éanna
🏥Hospital gave date for urgent Orthopaedic surgery

❌Had surgery cancelled waited 2 more years for another date that never came

🆘Presented to ED with infected bleeding sores 2 years after original surgery date. Received surgery.​
49. Cailín N
​⏳Waiting on Orthopaedic foot surgery

💔Waited 2 years for "annual" Spina Bifida Clinic
​
💔Waited 2 years to see Consultant Urologist
50. Eli
​⏳Waiting 2 years for "annual" Spina Bifida Clinic

⏳Waiting 2 years for Orthopaedic Surgery

​💔Due to delay now needs multiple extensive surgeries

💔Has gone from standing to now not being able to sleep due to discomfort
51. James Thomas
​⏳Waiting 2 years for Physiotherapy 

​​💔No review of Hip, Knees or Ankle issues in that time
 52. Buachaill T
⏳Waiting 3 years for Urology surgery

💔Previous delay in Scoliosis surgery had major detrimental effect on result
​
​⛔Does not have access to a Spina Bifida Clinic
53. JOSH
⏳Waiting 2 years for Orthopaedic Foot Surgery

💔Delay in surgery has caused a major decline in mobility
54. Jack
​⏳Waiting 3 years for Ophthalmology review 

⌛Waiting 2 years to see Orthopaedic 
​Consultant
55. Emily Rose
​💔Waited 2 years for urgent Orthopaedic surgery

💔Developed extremely sore blisters while waiting for surgery
56. Troy
⏳Waiting 2 years for Orthopaedic leg surgery

​​💔Legs have become so bad can no longer go into stander that is required for leg strengthening treatment
57. Gavin
🆘Hasn’t seen a Consultant Urologist
​in 15 years

🆘Extreme concern over kidneys due to lack of care

⛔Does not have access to a Spina Bifida Clinic
58. Isabelle
​💔Waited 2 years to be seen by Orthopaedic Consultant despite parents voicing repeated concerns that her physical health was declining

⏳Waiting for Orthopaedic foot surgery

⏳Waiting 2 years for "annual" Spina Bifida Clinic