When Freddie was born in 2010 I was lost. We were told he had a syndrome but they don’t know what type & it’s possible that they would never find out. But how could I get any support if he was undiagnosed? All the support networks I could find were aimed at certain syndromes, but who would support us if we didn’t know what was wrong with Freddie?
Looking back I suppose our support first began on the day Freddie was born & he was took down to SCBU. They were amazing people. They were so caring & kind. Having your baby laying in a bed hooked up to machines is very scary but they reassured me & helped me to hold him & attempt to feed him. They did a fab job looking after Freddie and from then on we have gained an army of different doctors & therapists who have all helped to support us in their own way.
- Community Paediatician We have only met this man once but we had a great 1st appointment with him. We spent a good hour discussing Freddies needs & hopefully we will be getting some support in the community at some point this year.
- Consultant Paediatrician We have a new paediatrician who I must admit I dislike(but I won’t go into that!) Our old one was lovely. He was with us from day 1 & always listened to what we said & helped us as best he could.
- Physio We have had 2 physios. Our 1st was great but unfortunately moved away. I was worried her replacement wouldn’t be as good but I’m glad to say she’s fab & genuinely gets excited when she sees Freddie make progress.
- Occupational Therapist Really lovely lady. She has helped us access so much equipment & is forever chasing people for us.
- Speech & Language Therapist Feel a bit let down by our SALT. Only seen her a few times since Freddie was born & considering his feeding is so poor I would of thought they would want to help us a bit more.
- Ophthalmology These were the people who sorted Freddie out with his super cool specs.
- Gastro Team Put us at ease through the process of Freddie having his NG tube changed to a button.
- Neurologist Probably our most honest doctor. Broke my heart when he told us Freddie had severe GDD but appreciate his honesty.
- Craniofacial Team Our scary app! 18+ doctors in one room all looking at you is a bit nerve wracking. Looking at possibly doing skull surgery but they can’t decide what’s best!
- Hand specialists & therapists Messed us about a bit but finally agreed to operate on Freddies hand & possibly will do his other hand too.
- Audiologists Not seen yet but on our list for this year.
- Genetics Can be very blunt when discussing your childs dysmorphic features but appreciate that they are trying to find out what syndrome Freddie has.
- Dietician Helped us a lot when Freddie was diagnosed with milk protein allergy & reflux. Always around to help when needed.
- Abbot Nurse Helped teach us how to tube feed Freddie & help to change his button. Coming to teach us how to pump feed soon.
- ENT Looked into Freddies breathing problems at birth & continue to monitor his small airways.
- Cardiologist Keeping an eye on his artrial heart defect.
- Respiratory doctor Looking into why Freddie is so noisy in the night & stops breathing.
I’m sure there is lots more doctors who have helped Freddie & i’m sure this list will continue to grow.
Outside of the hospital i have some great support from family & family, but i find my main source is online. It’s hard when your child is undiagnosed to find where you fit in the world of disabled children. Luckily in 2011 I discovered SWAN UK on facebook. A group set up for parents of undiagnosed children. The lovely lady who keeps SWAN going works so hard to help support families like mine & I’ve met some truly amazing people on there. These friends of mine are so strong & even though they have been through so much themselves with their lovely children they are always around to pick me up when I’m feeling down or get excited with me when I have good news to share. I love hearing about their children & it’s amazing how much you can care about someone you have never met. I’ve recently ventured on to twitter where I have found yet more lovely mummies to speak to. Some really inspirational people with some truley gorgeous children. I hope the people i am talking about know who they are and i thank you so much for your genuine kindness towards me & my family. It would of been nice to have been able to ‘meet’ you under different circumstances but i hope we continue our journeys together into the scary world of disabilities.
My closest support will be from my partner. The one person who knows Freddie as well as i do & helps me to fight for everything Freddie needs & gives me cuddles when we are having bad times. I would be truly lost without him around.
Also my amazing 2 year old daughter is amazing with Freddie. The first to rush to him if hes crying or has been sick. She helps to tube feed him & is always bringing him toys. Such a caring little girl.