July warrior – Noah

Noah’s story is told by his mum, Amy.

Noah’s nickname is Pickle, and no nickname could be more accurate for this little warrior! He is a cheeky little monkey, who has been a Pickle since the moment of conception! This is our story.

Throughout my whole pregnancy I suffered hyperemesis gravidarum (extreme morning sickness). At 36 weeks, after months of abdominal pain and vomiting black blood which was dismissed by my GP, I had an endoscopy. This revealed that the vomiting had eroded some of my stomach and oesophagus, and was causing me pain so bad I had been bed ridden for months.

Despite all the complications with my pregnancy we were always given every reassurance that the baby was thankfully growing and developing normally. That was all we really cared about, and after being so ill I was very thankful he was doing so well.

He arrived on 9th November weighing 7lbs 3oz. He was absolutely perfect. I was in awe of my body, being able to grow this amazing little human, despite being so ill myself. I was determined that from that point on, things had to be perfect – I did not want to get any part of parenting wrong! (Looking back now this seems laughable). Despite having a long list of names we both liked, I didn’t even want to name him for fear of getting it wrong!

As every new parent finds, the first week of Noah’s life was a sleep deprived blur, full of lovely new baby cuddles and adjusting to life as a family of three. Then, when Noah was 12 days old everything changed.

I was carrying my perfect little bundle from the front door to the car just a few meters away when i fell in to the road. I cradled him all the way to the floor, but as i fell I instinctively gripped his head, hard. This, combined with the impact of the fall, caused 2 skull fractures and a bleed between the hemispheres of his brain.

When a young baby arrives at hospital with such a serious injury the parent is, quite understandably, guilty until proven innocent. A social services, police, safeguarding investigation followed which was an unspeakably painful experience. I was not allowed to be alone with Noah, despite being his source of milk.

Thankfully the investigation found that it had indeed been a terrible accident, and even more thankfully the doctors said there was no lasting damage, or bruising to his young brain. When I asked the doctor what the impact may be on Noah’s future he said “none whatsoever, there is a vanishingly small chance this will affect him in later life”. Again, I had a huge sense of relief. Thank God this awful experience would not have a lasting effect on him.

From that point on, we tried to continue with life as normal, going to baby classes and coffee meet ups with mum friends. Noah was always noticeably different to the other babies. He would scream and scream and scream and be awake for 16 hours straight as a newborn. His behaviour was put down as reflux and CMPA by his paediatrician.

At around 8 weeks old I noticed he had started to do some strange movements. I mentioned it to the GP who reassured me that it was nothing and all babies make strange movements. A week or so later I saw a different GP who had the same opinion. Our health visitor actually saw him doing a cluster of movements and told me they were hiccups.

In total we saw 5 different GP’s before we finally decided to take him to A&E. By this time I had video evidence of the episodes which I showed to the  doctor. Again he told us the movements were nothing to worry about.

Two weeks later on 6th February, after doing research online and scaring myself silly, I was absolutely convinced Noah was presenting with IS seizures. I took him back to A&E and this time saw a different doctor who agreed the movements looked suspicious. We had an EEG which confirmed that his brainwaves were extremely abnormal, but didn’t show any seizures. We were told he did not have IS.

We were relieved to hear the doctor say this, although I was still convinced there was something wrong. Noah’s paediatrician actually referred me to the perinatal mental health team because of my insistence that something was not right, she believed I was over anxious.

Another 2 months went by, with hundreds of episodes happening daily. Noah had not really developed from a newborn stage at all. He had never held his hands in the midline, or sucked his thumb. He spent long long periods of time staring blankly in to space.

Looking back now, I think it was fairly obvious things were not right. I knew deep deep down that he had IS, but I did not want to believe or accept it. We had been told by the doctors that he didn’t have it and I was afraid of doubt being cast on my mental health again.

On 5th April I took him back to hospital once more and, thank God, actually saw an on call neuro doctor for the first time. Noah had been asleep in my arms and woke as she arrived. He performed a 25 minute long cluster of spasms for her and we FINALLY got the diagnosis I had fought so hard for. We were admitted to hospital for a month while we struggled to get control of the spasms. We have had all the testing available to find the cause of Noah’s IS but all testing has come back negative. To this day, we still do not know the cause.

Since then we have embarked on the long hard fight all warrior families have. Relapses, bad reactions to medications, side effects, the development of new seizure types and more medical appointments than I care to remember.

Noah has never given up fighting. At 19 months he has around 15 words and has recently started walking. He is the happiest, cheekiest little pickle i know. Despite all the trauma he has faced he is thriving.

It’s fair to say that no part of our parenting experience has gone as we expected! The first 18 months of Noah’s life have been HARD beyond explanation. However we have both reached a place now where IS does not consume our every minute. We are now able to enjoy normal things most families take for granted.

For any newly diagnosed families just starting out on this journey, I would say, hang on in there. You do not know how strong you are until you have no other choice. Things do and will get better, I promise.

This journey has changed me beyond recognition, but I am now a better, more attentive parent than I would have been otherwise. I will cherish every macaroni picture he ever makes me, and never take him anything he does for granted. We celebrate every inch stone, not just milestones, because they are so hard won.

This journey has given me new found meaning to the phrase ‘pride and joy’. Raising Noah in to the extraordinary little person he has become is my greatest achievement.

I have recently made a Facebook page to share the ideas we have used with Noah to support his development called ‘Play Therapy for Extraordinary Little People’. It uses all the ideas for physio/OT/SLT I have learnt, but with the emphasis on fun!

I am incredibly grateful to UKIST for all the kindness and support shown to us over the past 18 months. I’m also thankful that through UKIST I have met an amazing group of incredible, strong, supportive women who I am certain will become life long friends. I hope one day soon our extraordinary little people are able to meet and play together, and make friends too.

On behalf of UKIST we’d also like to say thank you to Amy – for her dedication to helping other families on our support group, for sharing her great therapy ideas, for sourcing and funding supportive seating for members of the group and for agreeing to be a regional parent support coordinator.