I’m Lisa, and mum to Karter, a happy little two-year-old. But at the 20-week scan during my pregnancy, we were told Karter had a tumour on his neck. I honestly thought Karter wasn’t going to make it and our world fell apart before our eyes.
The doctors were fairly certain it was cystic hygroma. At 3x3cm, the tumour seemed massive on a tiny baby. Scans were carried out every three weeks until the end of my pregnancy. Every precaution was taken regarding the birth, and thankfully, Karter was born a healthy baby boy.
However, at seven months old, his lymphatic malformation (LM) became infected, and he was admitted to hospital for seven long days. This was so scary. It took days for the hospital to gain control of the infection. His LM tripled in size and was almost as big as his head. It grew to 15cm, and never shrunk back to its original size.
Karter has grown up to be a happy little boy
Karter is now almost three years old and has only just started to comment on his LM – I just tell him it means I’ve got more of him to love. The most negative reactions we’ve received have all come from adults. A lot of people stare, gasp and ask what is wrong with him or point out that there’s something wrong with his neck. Luckily, Karter’s dad and I are thick-skinned and we’re able to deal calmly with any ignorance.
I believe that more negativity will come as he gets older, but all of Karter’s nearest and dearest are a great support. He is so loved by everyone he meets.
At one of Karter’s appointments, we were told that most children with this condition have surgery before they go to school, due to the bullying that they can experience. That stuck with me and thinking about children bullying Karter breaks my heart.
As well as worrying about what children might say or do, I’m also concerned that other children’s parents might tell their children to stay away from Karter, further isolating him. I personally haven’t thought any further than that, as it’s one step at a time, and there’s no point focusing on the what ifs. We will be learning together how to address the questions that will be asked.
I don’t want Karter’s difference to stand in the way of what he can and will achieve.
For the sake of Karter and other children with visible differences, I hope that people will learn to treat everyone with kindness, no matter their appearance. I would love for people to be more understanding and respectful about what they say to both people with visible differences and their loved ones. The more awareness we can spread, the more people will become educated, and that’s how we break the stigma.
Better understanding and representation is key to this. I’ve seen illustrators starting to use children with visible differences in books and on flash cards and emotion posters, which is great. All schools should have these types of resources.
Karter’s future will be bright, and he will definitely be successful at what he does. I don’t want his difference to stand in the way of what he can and will achieve. He will stand up for what he believes in and hopefully educate and bring people together.
Tough times are ahead, and they’ll be challenging to overcome, but remaining positive will get us through it.
For other parents of children with visible differences, I say stay strong and be your child’s voice. We are here to guide and support them. People will stare and make silly comments but that is down to ignorance. Some people will remain rude, but that says more about them than our amazing children.
