Turning a negative into a positive.. our eldest children, Issac age 9 and Everlyn age 6, have asked to help make a difference to awareness of their baby brother, Jude’s, condition.
They will start by walking 5k a day for 7 days from the 19.06.23.
As those of you who know us will know the youngest of our three children, Jude, has faced some challenges since being born.
Jude was born 38.5 weeks by planned C-Section. During birth we think he swallowed too much fluid which led to Newborn respiratory distress syndrome (NRDS).
Due to this Jude needed resuscitated twice within the first 60 minutes of his life. He spent 24 hours in special care received a minimal time on oxygen and was took off antibiotics within 24 hours once his bloods returned normal.
Jude passed all his initial checks, hearing was perfect he was doing well and we took a happy healthy little boy home three days later to be a family all together with his big brother and sister.
For the next 7 week, apart from a little stint of bronchiolitis, we would argue black and white Jude was visually and physically a perfectly “normal” little boy.
It was at this 7 week point things started to unfold.
Jude wasn’t focusing, by the 2 month milestones Jude hadn’t actually looked at either me or his dad, siblings or anyone at that matter.
Paying more attention to his eyes we noticed a little roving wobble.
Mentioning this to his health visitor at his next check up we were referred to and seen by our GP the same day. From here we were referred to pediatric ophthalmology.
Skip forward another two weeks Jude was seen and diagnosed with
▫️ bilateral possibly reduced visual acuity with Nystagmus.
Fast forward another two weeks, Jude’s dad noticed a lump on his neck.
We took Jude to the GP and he was put on a dose of antibiotics, advised to have him reseen if this got bigger or didn’t go away with antibiotics. Which it didn’t.
A week later we took him back to the GP, we were then given a Rapid Access appointment on Childrensward to be seen by a consultant.
The lump on Jude’s neck was nothing to worry about, just a side effect of the bronchiolitis however the consultant seemed to show a interest in Jude’s eye movements and picked up on mine and Jude’s daddy’s anxiety towards everything.
He suggested we send Jude for a skull ultrasound to put our minds at rest whilst his fontanel was still soft.
3 weeks later we took Jude for his ultrasound. Following this is when we heard the words;
▫️ Absent septum pellucidum with fusion of anterior horns and bodies of the lateral ventricles with fullness of lateral ventricle.
Jude has since had two MRI’s that have confirmed these findings and is currently going through testing and being seeing by paediatrics, genetics, ophthalmology, neurology, endocrinology and is awaiting a cardiac assessment and abdominal USS to help diagnose as these finding seems to be a rare abnormality.
Prior to this we had never heard of Nystagmus alone never mind the rest.
Nystagmus is reported to effect around 1 in 1000 people yet it is not a widely known condition.
Jude is now 9 months old and is thriving hitting all milestones and is the happiest little boy, the only sign of him having any of this is his unique adorable eye wobbly. This had drawn a few comments whilst in public to his appearance.
We as a family, at the suggestion of Jude’s big sister, have decided to raise awareness to help answer the questions people may have when they see people like Jude and raise money to give back to all the charities involved. Starting with the Nystagmus network.
Thank you for reading and being part of Jude’s journey with us 🐻✨