Hazel's Story
Tell me about about you?
My name is Hazel Newhouse, I am a pblogger and a mum of 4. I have 3 girls and a son. We live in Bedfordshire and live self sufficiently growing our own food and being passionate about reducing waste and our plastic usage.
What is your's or your loved ones limb difference?
My son Jimmy was born with Bilateral Syndactyly and webbed toes. His Syndactyly affects both hands, which makes his ring and middle fingers fused. The tips of his fingers share a joined fingernail. Both feet have webbing on the 3rd and 4th toes too.
When did you find out Jimmy had a limb difference?
We found out about 3 minutes after he was born. We didn't have a clue that he was going to be born with the Syndactyly. It was a huge surprise but it does run in the family. My husband's dad has webbed toes and his brother had webbing on one hand (it was separated when he was a young boy), but nothing as complex as Jimmy's. When he was born they laid Jimmy on my chest, I thought the fingers on his right hand were stuck together with baby-gunk. I tried wiping them and that's when I realised that they were stuck together. I asked the midwife to have a look. She then inspected his other hand and feet. That's the moment that we realised all 4 limbs were affected.
What help and support have you been offered?
Our midwife referred us to the plastic surgeons right away. A paediatrician came to see us on the ward who confirmed that the condition was called syndactyly. When Jimmy was 6 weeks old we saw his plastic surgeon to discuss the future for Jimmy (operations and likely problems that we may encounter). Other than that we haven't had any other support. To be fair, we don't really feel that we need any. I have joined a few Facebook groups and follow some wonderful Instagram pages, and we are a great community for advice.
What are the positives to Jimmy's limb difference?
The main positive, and something we take with hilarity ,is that we don't have to battle the fingers on gloves, instead Jimmy wears mittens! So much easier than wiggling 5 little fingers into gloves. Also, his little fingers and toes are super cute!
What negatives have you encountered?
Jimmy does struggle holding things. He was quite delayed compared to other babies of his age with fine motor skills. He can be clumsy with his hands and quite often drops things as he doesn't have a very strong grip. His joined nails are like little razor blades, They are so sharp! It's also really tricky to cut his affected nails, because they grow downwards. They often become infected and bleed randomly.
Have Jimmy needed to have any procedures?
When Jimmy turns 1 in a few weeks, we have been told to expect a letter from the plastics department calling for Jimmy to have x-rays. This is to see if the bones are also affected. He will then have his 1st operation to separate his right hand fingers. A few months later he will have a second op to separate the fingers on his left hand. The doctors have said that an operation wont be needed on his feet, unless the webbed toes start to cause problems with walking.
What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference?
Just enjoy the cute uniqueness of your baby. Yeah, things will be different, people will ask questions and you will find yourself trying to explain your child's difference to everyone you meet, but your baby doesn't know any different. To them, it's normal. Join groups and pages on social media, as these are real people with real experiences, rather than googling the condition and scaring yourself silly!
What advice would you give a kid with a limb difference?
You're beautiful, no matter how many fingers or toes you have. People love you and your differences. 5 fingers and toes are overrated!
Instagram : @TheNewhouseFamily
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