Noah S's story

11th November 2014

In March 2013, Noah, Gareth Stephenson’s eight month old son, started to become unwell with lethargy and sickness. Gareth could never have imagined the devastation that would follow, as Noah was diagnosed with meningococcal meningitis and septicaemia resulting in the loss of a leg. Here, Gareth shares the details of his nightmare

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Happy, normal child

Noah was eight months old, and a perfectly happy normal child. One evening he went off his food and was a little sick, but it was nothing out of the ordinary for a baby.

Later that night he became lethargic, staring into nothingness, and he wasn't really reacting like he normally did to us.

The next morning we took Noah to the local hospital. The doctor thought Noah could have bronchiolitis, but he wasn't sure so he told us to take him straight to Cardiff Hospital. When we got there, Noah was seen straight away and then he started going downhill rapidly.

Getting worse

Noah was struggling for breath and his heart rate and blood pressure were low. He started getting a few spots around his eyes and mouth and luckily for us the doctors could see his symptoms developing and they quickly suspected meningitis and acted accordingly.

He was put on numerous drips, and was sedated with help from a ventilator machine to regulate his breathing. Very quickly it became apparent that he was losing and leaking fluid internally, so they were forced to replace the liquids very quickly.

Within a few hours, Noah’s body had swelled considerably and he was fighting for his life. The doctors then gave us the devastating news that he may not see the night through. We were told to prepare for the worst but to take things minute by minute.

What was easily the most horrific and scariest few hours of mine, and my family’s, life, then turned into a waiting game as we couldn't see Noah as the medical staff were working furiously to keep him alive.

Losing a limb

As Noah’s body fought the disease, he lost circulation to his hands and feet and they quickly went a colour that I can only describe as ‘rigor mortis’ in looks. Over the next few days he stabilised, but his hands and feet were turning black, like frost bite, from the lack of circulation.

The doctors made three cuts along his lower left leg to help ease pressure and to try and regain circulation. This worked to some extent, but it was soon clear that his lower left leg was dead tissue and it was only acting as another hindrance to Noah as he battled for his life. The decision was made to amputate Noah’s lower left leg below the knee.

After the amputation, Noah started improving day by day, but the tips of his fingers and toes remained black and dead. Over the next few weeks, he stayed in hospital improving all the while.

After ten days he was brought out of sedation and, after what seemed like an eternity, our little boy woke up. His fingertips and toes gradually settled at being black, shrivelled and dead and we were informed they would probably fall away over time; it was just a hope for him to get as much back of them as possible.

Learning to adapt

After six weeks Noah finally came home. Over the coming few months, gradually the dead tips of his fingers and toes scabbed over and fell away. His leg stump wasn't fully stitched over, but with daily dressings it eventually healed itself over to form a stump.

Noah started crawling again very quickly, and once his fingers tips had fallen away he started using his hands like nothing had ever happened; like he wasn't missing parts of them. In total he lost his lower left leg, the tips of all his fingers in varying degrees and half of his remaining toes - except the big one on which he just lost the nail.

Noah's now trying to stand and soon we will have his first prosthetic limb to help him learn to walk and have a natural childhood. I can only say the whole experience was surreal, horrifying and extremely concerning. The thought of losing our baby was inconceivable and thankfully we got most of him back to where he should be, home.

Overwhelming support

I wouldn't wish this experience on anyone. I knew about the effects of meningitis beforehand from what I’d seen on the news, but I never thought something so cruel could happen so indiscriminately to an innocent beautiful child. If I had known the consequences beforehand and that there were vaccinations available, I would do anything in my path to ensure not only my children, but all children are given the vaccine to protect them from such a monstrous horrible disease.

I can never ever thank the medical staff who treated and saved Noah’s' life enough, I owe them everything. In the months that followed, the support from friends, family, colleagues and members of the public has been incredible.

So many people got on board and have helped us to raise over £10,000 to help towards any specialist prosthetics, care and rehabilitation Noah may need above what the NHS will provide.

Bring in the vaccine

Having my family fall victim to meningitis, and having to live with what happened for the rest of our lives, is ridiculous when there is a vaccine out there which could prevent any child or family going through what we and many others have. I cannot support this Beat it Now! appeal enough.

  • Riley

    Riley's story

    He was put into an induced coma so that he could fight the disease

  • Savannah

    Savannah's story

    My instincts told me I couldn't just take her home and give her Calpol

  • Louie

    Louie's story

    I couldn’t believe what was happening in front of my eyes

  • Jessica

    Jessica's story

    She was vacant, just staring the most chilling stare. I’ll never forget that look