Harry’s story

When I was expecting Harry we found out at our 20 week scan that he had Talipes in both feet. This led to further scanning and although nothing else was picked up we were offered the option of having an amniocentesis.

We decided to go ahead, feeling that we would prefer to be prepared if there were any further issues with our baby. The results of the amniocentesis came back normal, which was a relief, so we just did as much research into Talipes treatment as we could and prepared ourselves for lots of trips to the hospital for plastering.

Harry arrived after a difficult assisted birth on 28 April: A beautiful boy with wonky feet. Treatment started to correct his Talipes at one-week-old. Unfortunately at 10 weeks old, and two days after he’d had an Achilles tenotomy on both feet, Harry had a seizure. Looking back I wonder if he’d actually been having seizures before then and asked myself if he been a bit floppy and if he had given me proper eye contact. But as a first time mum, and one coping with enough stress from managing bulky plasters and hospital trips, I felt we had been dealt our lot so nothing else could be wrong. A long story short, Harry was admitted via A&E to the local children’s ward and we stayed there for a week while they tried to get his seizures under control. We were discharged a couple of times but always ended back in again as the seizures returned once the medication wore off. Every test was carried out – MRI, bloods, lumbar puncture, ECG – and they all came back normal. Finally on the third admission we got a diagnosis (of sorts) delivered to us like a slap in the face: ‘He has severe epileptic encephalopathy, it’s not good news. Go home and give him lots of love’. And that was it. Go home.

There were so many questions I didn’t want to ask and so much denial for so long. We had appointment after appointment in what felt like every speciality possible as more problems became apparent and no one seemed to be able to join the dots. Every time we were referred to another specialist or for another test we felt so anxious and alone in our journey.

I wish someone had told me about SWAN UK (syndromes without a name) at an earlier stage. Harry has so many issues with Global Developmental Delay, visual impairment, learning difficulties, low tone, feeding and tummy problems, communication difficulties and issues with his feet and hips, but we just didn’t seem to fit anywhere.

It’s so hard to explain to someone on the street, especially having a child who looks ‘normal’ (I hate that word) but perhaps young for his age and therefore still needs to be in a pushchair.

I started looking for other Harrys and even the geneticist couldn’t see an obvious cause so entered him into some diagnostic studies. It was only when a good friend of mine shared a blog that I learnt about SWAN UK. The little boy had some similarities to Harry and so much of the blog post resonated with me. It was a real light bulb moment. I happened to message the blogger who was lovely and told me about SWAN UK. I cried when I joined and soon after they sent Harry some congratulations balloons just to tell him he was brilliant! Suddenly we belonged somewhere. Reading their Facebook forums made me feel such relief. There are parents and carers with so many similar issues even though every child is different and facing their own battles.

We have recently been to the stay and play sessions at Worcester Snoezelen sessions with SWAN UK and were able to chat with parents and meet other lovely swans which as a family has been invaluable. 

Harry is such a delight to be around (most of the time!). He is happy, giggly and sociable and he brings a lot of love to those around him. He now has a younger brother Edward who also seems to love him just as much as us while sometimes using him like a climbing frame! Having a diagnosis wouldn’t change our love for Harry but knowing might help us understand why he has the difficulties he does and ease any doubts about other possible causes. It would also make form filling and explaining to people a lot easier! 

I’d encourage anyone else in the same position to join the fantastic network that is SWAN UK. We are so proud of our swan child and proud of the community he now belongs to. 


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