“There was definitely a blue line there! I could not believe it after the amount of negative pregnancy tests I had thrown away in the last 6 months. I was so happy – until on 11 o’clock on that very same day, I started to bleed. That was the start of a very difficult pregnancy.
At the 20 week scan the sonographer put the cold gel on my belly, and passed the probe over it…our baby was a boy. I smiled and felt a pang of love for my little bean. However, there was something else too. The sonographer said there were two ‘white markers’ – a calcium deposit in the heart and extra fluid around the brain. On their own they were nothing to worry about, but together were an indicator for Down’s Syndrome.
My heart sank to the bottom of my body, my emotions were everywhere. There was something wrong with our baby. I cried into my husband’s arms, my sister was there too. This was meant to be a happy day – finding out the sex of our baby, going to the shops and buying the relevant colour baby grow. Not this….
I was always worried and scared about disability – about something not being right with MY child, even before I fell pregnant. In particular I was worried about Downs Syndrome, even though there’s no history in our family. I suppose I worried because that’s the main syndrome which is screened for. It’s weird now to think about this, it’s almost like I had a sixth sense, and now how I think of disability in a total different way. It doesn’t scare me now. I just go with it…but more about that later.
After the longest three days of our lives, I had another scan. The consultant said my nuchal screening gave a very low chance of our baby having Downs and from what she could see it was highly unlikely. However, the only sure way to find out was to have amino testing. I did not want to do this because of the risk of miscarriage. We left the hospital crying again. But this time it was tears of happiness; there wasn’t anything wrong with our baby.
I bled on and off the whole way through, worried so much and felt really low and depressed. I had SPD, was in constant pain and couldn’t walk. It was almost as if the pregnancy was toxic to me. Plus Morgan (as we now called him) did not move much. I brought a fetal heart monitor just to reassure myself.
I somehow got through to 35 weeks and I started to bleed again. I went to the day assessment unit where they asked me “Do you know you are small for your dates?” I stayed in hospital that night, and had a specialist scan the next day. The placenta was failing and Morgan had stopped growing – the amniotic fluid was low and Morgan was not doing well, and was in a very awkward transverse breech position. He needed to be born.
The next day at 12.02 pm on 2nd October 2007, a 4lb 6oz Morgan Aaron Rose came into the world by C-section. He was all squished from where he had been stuck in my pelvis – no wonder they couldn’t get him out! It took 25 minutes to deliver him out which is a really long time for a C-section. His head was the shape of a banana as it had grown around his legs which were wrapped around it for a long time. He was a skinny little thing but he was beautiful with lots of dark hair and the most gorgeous button nose.
Morgan spent 3 weeks in the Neonatal Unit. He did not have a suck reflex, breast feeding was impossible; he could not maintain his body temperature and had a bit of jaundice. I managed to get him to bottle feed an ounce of expressed breast milk – it took him in an hour, but he did it!
After 3 weeks we finally took our baby boy home and we thought that we would be the end of our hospital visits. Everything was going to be fine now, or so we thought. Morgan had reflux. Michael sat up all night watching Morgan as he vomited all the time then I would take over during the day. We were so scared he was going to choke. There was vomit everywhere; constant washing and my poor baby was in pain. I spoke to the Health Visitor who said all babies are sick, it’s normal.
It made me feel like a neurotic first time mum but I knew this was not right. I finally went to the GP who referred us back to the hospital to see a reflux specialist. Morgan had some tests and was given meds and a special formula. It helped but was still hard to manage.
Morgan had torticollis (really stiff neck) and a type of plagiocephaly (misshaped head) because he was really squashed in my tummy and could not move. Our GP referred us to a physiotherapist. It was in that that treatment room that the realization of everything that had happened in the last year hit me. I broke down.
Sally, the physio, was great and she made a huge difference to me in those early days. It was Sally who referred us for Occupational Therapy and to a special needs play and development group. She recognized Morgan was different. At this point I can honestly say I did not really realise my baby was SO different from other babies. I had not done this before.
I met with some mums I went to an NCT group with, then it hit me like a ton of bricks – Morgan could not hold his head up or sit up like the other babies. He was still so tiny and in his little new-born baby grow still not really doing much. Their babies were so much more animated than Morgan. I stopped meeting those mums – it depressed me.
During the first year of Morgan’s life we had lots of hospital appointments for eyes, ears and reflux and a cranio facial specialist for his head shape. He had helmet fitted at 8 months old which helped mould it to a better shape – this aided his balance too. He wore his helmet for about 7-8 months, 24 hours a day.
He sat up for the first time when he was 1 year old, he walked at 19 months. By the time Morgan was 2 years old, he had had grommets put in, his adenoids removed and an operation to bring down his undescended testicles. He was very much delayed developmentally, non-verbal and much like a baby. I was thinking why?
I asked my GP for a referral to a Child Development Pediatrician. At the appointment I asked for genetic testing and a Brain MRI. The pediatrician agreed this was a good idea and referred us. We had an appointment with the geneticist who said that no particular syndrome came to her mind from examining and observing Morgan – she ordered the MRI and the bloods for the genetic testing would be taken while he was under GA.
All the genetic tests came back normal. However his brain MRI showed ‘significant changes’ – he had a lack of white brain matter and also an issue with grey matter. The radiologist writing the report put this down to infection or something that had happened in the womb given the pregnancy history. So that was it – it was a one off, something had happened in pregnancy which had caused Morgan’s brain to develop abnormally. This is why he had his problems, or that was what I was told and I accepted that. At least I had an answer.
Morgan had Portage (play therapy at home) and went to a specialist nursery at the age of 2 years and 4 months. This is where he came into his own, and so did Michael and I. Meeting other parents and families with children with disabilities and special needs was what gave us strength and a sense of belonging – It was a truly wonderful place.
By the time Morgan was 4 he started a special school – he loves his school and is doing fantastically. Morgan is non-verbal but has his own language and sound. He uses limited Makaton signs, loves singing and dancing and anything to do with music. Morgan is now 5 years old, developmentally he is about 12-18 months.
We decided we wanted to have another baby, a brother or sister for Morgan. I became pregnant again and our new baby was due in February 2011. I was monitored really closely, lots of extra scans and appointments, and I was constantly worried that something would go wrong. I requested a planned C-section, as I didn’t want any surprises, I kept worrying about something happening at the birth – I already had one child with special needs.
Jayson arrived 4 weeks early after my waters broke and I had to have an emergency C-section. He was stuck and they had to use forceps to get him out of the incision. He was all bruised and looked nothing like his big brother. He breast fed straight away and I thought “this is what it feels like to have a ‘normal’ baby”. Jayson also developed reflux and when Jayson was about 3 months old, my instinct told me all was not well. I just knew. I contacted Morgan’s Pediatrician and asked her to see Jayson.
She agreed. Jayson was very floppy, he was developmentally delayed and she could see why I was concerned. She ordered an MRI and the results took a few weeks to come back. The Pediatrician rang me to say that the results weren’t normal, that Jayson had a striking lack of white brain matter etc. etc. etc.…. It was happening again. In my heart I knew. But to hear her saying it threw me. I was in shock and I started to cry.
That was in January 2012. We saw the geneticist who explained that they had been convinced that Morgan’s problems were a one off but that now Jayson was affected in the same way. Both boys have the brain injury Periventricular Leukomalcia (PVL) they also have other brain abnormalities. The cause is a genetic one that they both share, but so rare current science cannot identify the cause so they were diagnosed with ‘a syndrome’. The geneticist even presented my boys at a regional conference to see if any other professional had an idea of what gene could be responsible for their issues.
A year after receiving Jayson’s MRI brain scan results, he was diagnosed with Spastic Dipliegia Cerebral Palsy – although this is not his definitive diagnosis, more like a symptom as the PVL has caused the CP. A genetic cause is thought to be responsible for both boys having a predisposition to white matter damage. It’s mind boggling really. Two boys with a ‘Syndrome Without A Name’ swans as we like to call them!
Morgan is now 7, developmentally he is about 2-3 years old. Essentially he’s non verbal, but he tries really hard to talk and is very vocal! He finally said ‘mummy’ last year! He has ADHD and attends a special school which is wonderful, he adores school.
Jayson is 4 and is a wheelchair user. He gets around at home by bunny hopping on his knees and he needs a lot of specialist equipment. He needs medication to help relax his tight muscles and has continuous bowel issues and reflux. Jayson is developmentally around 6-12 months, also non verbal and much quieter than his brother. He goes to a different special school to Morgan but it is located right next door!
So that’s it in a nutshell, there are bits in-between of course, but I would need to write a book to fit it all in!
I focus on doing everything I possibly can to make my boys lives enriched and fulfilling, to keep them happy with lots of positive experiences. Of course I have days where I feel down and not so positive, on those days I turn to my husband Michael, my family and friends I’ve made through the boys special schools and through online special needs forums – they, more than anyone else, just get it. We hope one day we may get a diagnosis and we are part of the deciphering developmental delay study and the 100,000 genome project.
If I could give any parent who has a child with a brain abnormality any advice, it would be to be pro-active, try to remain positive and think of the here and now – not too far into the future – because we don’t have a crystal ball. But today is what we make it”.