Choosing a name for our second child was hard but we finally settled on the name Isaac, which we especially liked because it means “he laughs” in Hebrew, and every parent wants their child to be a smiley, happy person. Ironic that choice was to be – for Isaac will never smile, blink or even frown.
When I walked into hospital to have a caesarean (Isaac was in the breech position) little did we know what a journey we were about to begin. Surgery was uncomplicated, and our first few hours with Isaac were relaxed and beautiful. Me, my husband and our perfect baby son were left in peace for hours before being transferred to the ward. Isaac’s brother came to meet him a few hours later and, other than worrying about whether I would be able to see the last episode of Life on Mars that night, all seemed fine. That all changed as my favourite programme was about to start.
By 9pm that night, Isaac had still not fed properly and we started to be concerned. As he had still not fed sufficiently, every other hour we were woken to try to feed, and in between that time poor Isaac had a needle in his foot (eight times in total) to check glucose levels. When no amount of prompting could encourage him to feed, he was taken to special care at 3am and I was left alone, with no baby to cuddle, in a ward full of crying babies and feeding mothers. It took five days before we could go home and, even then, no one knew why he was having problems feeding.
The consultant paediatrician decided that Isaac should have some genetic tests to see if any specific problems could be identified. Investigations continued and we had two agonising weeks to wait to see what the tests revealed. We cried with relief when those tests came back negative. This relief was, however, short-lived. Although Isaac was feeding slightly better, I still instinctively felt something was wrong.
Over the next few months, Isaac developed well but his eyes were extremely turned in and did not move outwards. An appointment was made with the eye specialist, and we all thought the reason we were still waiting to see his first smile was because he had poor eyesight. Every day I hoped to see a smile from Isaac but, despite trying the usual peekaboo games, there was still no flicker of a smile. He had chuckled a few times and even laughed, but no smile lit up his face.
When Isaac was eight months, we had our regular check-up appointment with the paediatrician and he said he was happy with Isaac’s development. I breathed a sigh of relief, as I still felt something was not quite right, and then just before we left, in the chaos of packing everything up and trying to keep two children quiet, the consultant dropped the bombshell that Isaac has a rare syndrome called Moebius. The eye specialist had recognised the symptoms, impressively, as the condition is so rare, and passed the diagnosis to the paediatrician. We were told that Isaac had a condition (of which there are only around 200 cases in the UK) that meant he would never smile, blink or move his face. When we asked what this meant, we were told that he was as he was and there was no cure and were sent on our way. Clutching a piece of paper with Moebius syndrome written on it, I started my quest for answers.
In this search, one thing was evident and that was there was little likelihood of finding a consultant who specialised in Moebius, as there were too few cases of the syndrome spread throughout the country and there has been no research into the condition because of its rarity.
Isaac is now 11 months old and is a beautiful, happy little boy who delights in the company of his brother. We will never see his face light up with a smile but we know when he is happy, and he has a lovely giggle. He may be slightly slower to crawl and walk than other children but we are positive about his future.
As a baby, Isaac is unaware of his condition; however, as he grows, we will face different situations and we will have to negotiate each one carefully. Other families we have met share heartbreaking stories of their life with a growing and inquisitive child with Moebius. What do you say to a child who looks at you with a blank expression and says: “I am smiling at you mummy” and how do you cope with a teenager looking to experience their first kiss but who can’t actually move their mouth sufficiently? While Isaac is our second child, many of the experiences we will encounter will be new. Wherever possible , we will try to draw upon the experience of other parents, through the MRT, but with Moebius each person can be affected differently.
We are determined that while he does have a disability, it will not be disabling. It is our hope that Isaac will lead a normal and fulfilled life and will continue to find other ways to communicate his happiness.
To follow Isaac’s journey, go to www.isaachughes.blogspot.com