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"Nystagmus in infants"

About: Children & younger people's services / Health visting, Mansfield King's Mill Hospital / Ophthalmology

(as a parent/guardian),

A story about a baby with Nystagmus and the possibility of albinism.

My baby girl is 17 weeks old and when she was 2 months old I noticed that her eyes were not focusing. Pupils would run from one side to the other horizontally all the time and sometimes she would roll her eyes. At that stage, I hoped she was just a bit slow on eye development and it would settle down. Also, I have to mention that we have similar symptoms which run in the family, from my daughter's dad's side. Once she was a full four months old and her eyes were still not focusing, I and her dad agreed we need to get her checked out. It was my very first time accessing the children centre and the visit to the centre was very positive. The staff were really nice and we felt welcomed there. We were invited to see a baby group that was running at that time and explained how we can use services. Then health visitor (Clare) took us to a separate room where we were able to have uninterrupted time and look at my daughter's eyes. Clare introduced herself and explained her long service working as a Health Visitor. That was very much appreciated as it gave us the confidence needed. Clare also showed great interest in our case and asked questions about us, listened to me and made us feel welcomed and important! :)  Clare examined my daughter's eyes and she was very concerned. What she said to me next was not something that any mum would like to hear. She might be blind! My world turned upside down at that stage, but Clare was really great and she made sure that even something like this, was presented to me in the best possible way. Clare explained to me all I needed to know to prepare me for what will follow next. She immediately called my GP and registered my daughter as an emergency case. She requested for us to be seen at the eye clinic. She talked to the doctor on my behalf to make sure they understood the importance of our case. She explained all her findings to the doctor and we had a visit to the hospital the same week, thanks to Clare's quick actions, for which I am ever so grateful.  Clare explained what to expect from visits to the hospital and how to best prepare for them. She wrote down first, the most important questions I should ask, and gave me tips on how to prepare for appointments. At the end of the visit, Clare made sure that I knew she is here for us and asked if I could give her an update once we had visited the hospital. Thanks to Clare's proactive actions, now we know that my daughter has a Nystagmus condition. We had several tests already done in the span of a weeks time and she has been referred to specialists in QMC. She will also see specialists to help with her development. My baby girl is receiving the best medical support and all this is thanks to an amazing lady who is great at what she does! Clare is an amazing Health Visitor! A massive Thank you from my daughter, mum and dad! :)

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Response from Rachael Isaac-Pascoe, Professional Lead, Newark & Sherwood Child & Family Health Team, Local Partnerships 3 months ago
Rachael Isaac-Pascoe
Professional Lead, Newark & Sherwood Child & Family Health Team,
Local Partnerships
Submitted on 31/01/2022 at 16:02
Published on Care Opinion on 01/02/2022 at 09:10

Dear trapperxm68

Thank you very much for taking the time to give us such lovely feedback.

I have shared your post with Clare who was thrilled and really appreciated your kind words.

I am sure you already have the details, but you can also speak to our Healthy Family Team Advice Line on 03001233387 option 4 Mon to Friday 9-4.30pm should you need any further advice and support over the phone, or via text to our Parentline on 07520 619919.

I hope your baby daughter’s health and development journey goes well and I send my very best wishes to you both and the rest of your family.

Best wishes


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