Your Stories: Marie-Joelle and Benjamin

Marie-Joelle and Benjamin’s Visible Difference Story

Marie-Joelle talks about what it’s been like to be a parent to Benjamin, who was born with Goldenhar Syndrome.  

 It has got easier and I much prefer when people just ask me about Benjamin rather than stare.”

Marie-Joelle was pregnant with her first child and having her twenty-week scan when doctors first mentioned that they had a few concerns. They thought there could be something wrong with her baby’s spine and this triggered a whole series of investigations. However all the checks eventually came back fine and Marie-Joelle and her husband Steve were reassured that everything was okay.

It therefore came as a shock when Benjamin was born with several visible mal-formations. He was missing his right outer ear, he had a large cyst on his right eye and a lateral cleft lip. Marie-Joelle said that the care she and Benjamin received was amazing.

“My husband, who’s a professor of molecular biology, started googling straightaway and came up with the diagnosis Goldenhar Syndrome which we didn’t know anything about. The consultant pediatrician on duty came immediately and was absolutely brilliant. Benjamin had to have lots of tests to check his condition and confirm the diagnosis. He had his heart scanned, his spine x-rayed, his kidneys tested, his blood taken, his eyes and mouth checked…everything from head to toe.

 Benjamin was confirmed as having Goldenhar Syndrome, which is a craniofacial condition. Marie-Joelle and Benjamin were kept in hospital for five days while all the checks were carried out and she was supported to breastfeed as the cleft lip made feeding quite challenging.

“I was a bit oblivious to all the visible differences in those early days. I just thought ‘he’s lovely’ and it won’t be a problem. My mind was focused on feeding him, particularly when he started to lose quite a bit of weight. However I got lots of professional support, something that has continued to this day and for which we are extremely grateful.”

 Benjamin received his first pair of glasses when he was four weeks old and his hearing aid at the age of four months. At six months old Benjamin had his first operation on his cleft lip, which went well. Although Marie-Joelle had to take Benjamin to the hospital twice a week while on maternity leave, she found it easier to deal with than her husband.

“My dad is a reconstructive plastic surgeon so I have grown up around hospitals and hearing about operations. I also felt that in a way those visits gave me a sense of purpose and gave Benjamin and I some structure that was really helpful.”

 Benjamin is now nearly two and is a happy, sociable little boy. He has had several operations on his eye to remove the cyst, which have improved his sight issues. Marie-Joelle says they are very proud of him.

“Benjamin is such a smiley, happy little boy. He has these beautiful blond curls which everyone comments on. While his eye is still a bit of a worry and he still has to have lots of checks he is amazing.”

 Marie-Joelle says people are curious about Benjamin and they don’t mind answering people’s questions. Although in the very early days she found it quite hard at some of the baby and toddler groups.

“When I started going to some of the baby groups it was quite difficult as people didn’t know how to react, especially when Benjamin still had the cyst on his eye. Kids would ask me ‘why has he got a head torch on his head’. But it has got easier and I much prefer when people just ask me about Benjamin rather than stare.”

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