Jude Marrey born 17th November 2007

Jude Ethan Marrey

Jude Ethan Marrey was born on 17th November 2007 and joined his brothers Nathan and Joseph. Together with Mom (Rachel) and Dad (me – Ian) they live in Stourbridge, West Midlands in the UK.

Nathan, born in 1998, has always been a healthy boy (two broken wrists at the same time in 2007 aside) but Joseph, born in 2000, was diagnosed with coarctation of the aorta at around 3 months which needed surgery. Much of December 2000 was spent in Birmingham Children’s Hospital but ultimately the surgery was successful and Joe is a happy and healthy boy who has not experienced any problems associated with his heart.

Becoming pregnant in February 07 was a bit of a surprise, after 2 miscarriages in the previous 3 years the idea of a 3rd child had been pretty much laid to rest. Because of Joe’s heart condition the pregnancy had a little extra monitoring with additional scans for possible heart defects but all was fine apart from some terrible sickness in the earlier stages and a few pains later it was all good.

On 17th November Jude Ethan entered the world and it appeared that he was healthy. We weren’t to know what was to come.

Just after birth the usual measurements were taken but were plotted incorrectly – significantly the head circumference was below the 0.4th centile which we’ve come to learn is not a good sign.

A few days later we heard from Spain that my Dad had suffered a heart attack and was in hospital. With a newborn baby I decided that as Dad had managed to survive the initial attack there was a good chance that he was over the worst so I decided not to fly over there and visit.

Initially, Jude was just like every other baby – he cried, he fed, he gave us presents in his nappy. We, and others, were concerned about apparent discomfort with wind and all types of drops, solutions and medicines were tried to find him some relief. Nothing worked.

Our health visitor came to see us and despite trying to impress our concerns about Jude’s discomfort she seemed much more concerned about the fact that his head circumference was still below the 0.4th centile.

Christmas came and went and then early in the New Year my Dad passed away. He had lived in Spain for a few years and despite his recent health problems, his death was a complete surprise. He had not met Jude and the day before his death I had decided that I would go over and see him at the end of January and booked the flights. 2 days later I was attending his funeral.

Jude was becoming increasingly more irritable with what we thought was still colic. He had been referred to the Consultant Paediatrician due to his head circumference and this had led me to google what this might mean – I got as far as microcephaly. The information on this was a little bit too much to take in and with my Dad’s ashes still to be returned to Ireland for burial we had other things to think about. I had also just started a new job and I was settling into the new role.

Following a few more trips to the GP with Jude our Paediatrician appointment was brought forward. We went the week before flying out to Ireland for my Dad’s 2nd funeral and were also booked in for an EEG. I think we were still blissfuly ignorant.

While we were in Ireland, Jude was clearly suffering and we also had a phone call from the hospital saying they wanted to see us as soon as we returned. On Tuesday 26th February we went back to hospital to be told that the EEG had indicated that Jude had Infantile Spasms – a rare and serious form of epilepsy in children – and it was like a light had been turned on for us, but a light had turned out for Jude. A further google just gave bad news about his prognosis and everything seemed very bleak. Jude hadn’t smiled for a while and was obviously in quite a lot of distress. All those symptoms of colic had in fact been Infantile Spasms.

We were told that he would be started on a drug called Vigabatrin, a drug that would hopefully control his seizures and correct the abnormal EEG – known as Hypsarrhythmia

27th February – my 38th birthday and I wake up not really in the mood to celebrate. Jude and his Mom had spent the previous night in hospital after starting on his medication. I made my way to the ward and was greeted by a happy, smiling and attentive baby. It felt like he was going to do whatever he could to keep us both brave. 27th February was a very good day. Our ‘new baby’ lasted for a couple of days before the medication took hold and he became very listless. We were sent home on a slightly reduced dose over the following weekend and we got glimpses of Jude every now and then. He was much less distressed that he had been but also showed little or no emotion.

Jude’s medication was increased again and on 7th March we went to Birmingham Children’s Hospital for a repeat ECG. The news was not good – despite having a good effect on controlling Jude’s seizures it had made no difference at all to the results of the EEG. The decision was taken to start Jude on ACTH, a steroid. The doctor said that we would know if it had any effect within 24 hours and we travelled back to our local hospital to initiate the treatment – 1 injection every 2 days for 2 weeks followed by 4 weeks of oral medication.

There are lots of underlying reasons for Infantile Spasms and as such a lot of diagnostic tests that must be undertaken in addition to providing therapeutic support as he grows up. We have had the blood tests which have so far come back clear and on Monday he will have an MRI scan.

We try not to think too much about the future when we have so much to think about in the present. Thankfully, Jude has demonstrated a number of developmental milestones and we hope that the ACTH will prove to be successful and enable him to push on.

jude-yawning.jpg

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8 thoughts on “Jude Marrey born 17th November 2007

  1. While it is a small comfort to know that we aren’t alone in going through an IS diagnosis, it is something that saddens me every time I find another story. From what I’ve found, not all IS stories are sad. There are many children who beat the odds. We are hoping to beat the odds, and I hope that you can too.

    If you need any support, there is a Yahoo group for IS parents. You have to join to read, but it is a small comfort. Do a search on infantilespasms. It’s the one without the space.

  2. Jude and your whole family have my most heartfelt wishes for a healthy and happy future. Words fall short of capturing the experience you are going through, as I well understand. Words also fall short of the sympathy and empathy I have for you. There will be good days, and bad days, but the worst is not knowing what is to come, and having so little in your control. As you said on my daughter’s blog, we are not alone, and sometimes knowing that is helpful.

    Jon, Emma’s Dad

  3. Hi Jude and family,
    Just to touch base and say that I know how devasted you are by the news of infantile spasms as we were at that same place 10 years ago….My daughter Emilie will be 11 this year and still suffers epilepsy and developmental delays, although has acheived more than we were led to believe. We have had some tough times with her over the years and undoubtedly will have more but she is a precious member of our family. Take care and I hope medications start to work for Jude soon and he starts making the progress you crave for him.

    Joanne, Mum to Emilie, London Uk

  4. heyya jude and family im mims friend katie mim talks about jude all the time threw the good and the bad news good luck with all the medicines and all that lot ..xxxx

  5. You are brave and amazing parents. I am reading your story for the first time and the beginning for Jude is where my son Joshua is at the moment (10 months old) From the bottom of my heart I wish you, Jude and all the family well. Is it possible to get your email address at all? I have so many questions and would like to share my story with you as well. Kind Regards, Rebecca

  6. Reading your story I felt like I am wrting my own words. My 10 month baby boy is also suffering from what they called idiophatic infantile spasm. He is having 6 ml of Predesolone, 8ml Sodium Valporate and one tablet of Clonazep 0.25mg.
    His all test were negetive so that he was called as Idiophatic IS patient. His jerks are gone but he is patting his own chest all the time. I dont know whether this is akind of side effect of sterod or is this a another sysmtomof IS.

    God bless all the child having this disease. We have cried all those days alone but now feeling kind of relief while seeing here others also suffering from this incidence.

    Cris

  7. Hi guys,

    I don’t have any problems with my kids who are both grown up and well.

    I just wanted to say that having been appointed as a new mod on the Wolves Forum I was then pointed to the fact that Jude was back in hospital.

    Craig posted the link so I’ve been all choked reading up the background to the poor fella.

    You’re so brave and that look you have Rachel as you lie on the pillow next to Jude is just so full of love it cracked me up.

    For what use it is, I want ed to tell you my thoughts are with you both and I trust he’ll be home soon as well as you can expect him to be. Get well soon Jude.

    Roy

    • hoping jude is well, you are amazing parents and hope the future holds wonderful things for you as a family. all my best wishes, adam x

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