Joey

     

In my 1st pregnancy with my energetic lovely little boy Leo, I found out at 38 weeks that I had a liver condition affected by the pregnancy hormones called Cholestasis.  This can cause stillbirth so they induced me at that time.  

Leo was healthy and born at over 8 pounds and has been happy and healthy ever since!

I was told I would have this same condition in subsequent pregnancies – so at 19 weeks pregnant with my 2nd child (Joey) cholestasis was detected and I was monitored heavily – I had lots of blood tests as they were being extra careful and they found a positive CMV (cytomegalovirus) infection as well, I HAD NO IDEA what it was (87% of women don’t know what it is) and it’s the biggest cause of disabilities in children – ranging from brain damage, cerebral palsy, blindness, deafness and many more scary things.

The devastation at this time was horrendous, put everything in life into perspective and my husband and I were a mess! Our local hospital just had no real information about it (like many of the NHS) and Paul and I were told we should consider termination as the outcome is usually very poor and the babies have no standard of living (I had a baby bump and could feel my baby moving) as you can imagine we were distraught, a day we will never forget. I declined this and insisted I talk to someone more specialist and had I had also done my own research. I was referred to Kings College Hospital in London where I went that same day, it was the specialist foetal unit of Europe and they had doctors there who knew exactly what it all was about and they said that we had a 60% chance of everything being fine with the baby (quite the opposite to what we had just been told by the local hospital!) and from then on I was scanned at the London hospital (a trip into London every 3 weeks!). So the consultant advised us that we had a 40% chance of passing the virus through the umbilical cord and only 10% of those babies are affected by CMV – as each of my scans were normal and very thorough we assumed we were the 60% that hadn’t passed the CMV through.

I had a choice to have the amniocentesis which would have told me 100% if I had of passed the virus to the baby but I felt what was the point in having the extra worry and risking miscarriage. I was having the baby. Every scan showed regular growth, healthy organs and all was looking good, then I had a choice to have a baby brain MRI scan at 34 weeks pregnant and this also showed healthy. So we assumed we were the 60% hadn’t passed it on to Joey and it was just a horrible worry but we were going to be OK. 

I was induced at 37 weeks due to the cholestasis (liver problem) and 48 hours later my beautiful Joey was born – 7 pounds 13 and perfect! He had a few red spots all over his face and tummy, which I presumed was petechiae (as I had been reading what to expect if he did have CMV) but it wasn’t it was just pressure marks from the birth. There was a big team of doctors around as they knew it was a high risk birth and although a bit scary overall they did an amazing job and checked him all over for quite a while. He was jaundice and had low blood sugar levels at first of which I was told to top up with formula after a breastfeed and this quickly corrected his sugar levels. So at this stage, we thought WOW we have a healthy baby and he had escaped the CMV virus.

His urine and blood were checked and 1 week after he was born it was confirmed that he was CMV positive! A very scary day for us as we knew what we may face. At 1 week old he had a brain ultrasound which showed no calcifications (problems) and so we then just had to worry about blindness, deafness, cerebral palsy and autism. Still a very scary prospect for us. We were referred to Oxford Children’s Hospital where they had more specialist care and a 2 hour meeting confirmed all the facts about CMV and all the tests we would face for the next 2 years. They were concerned about his head circumference and told us to monitor this monthly to rule out hydrocephalus – to date, he is still on track with his growth and nothing to worry about. His hearing tests have all been perfect and eye tests (which were so distressing when he was a newborn) are all OK!

He is nearly 18 months old and is walking, talking, throwing tantrums and 100% healthy so far so good.

He still needs tests every 3 months until he is 3 - 4 years old but we are hopeful.

I wanted to share my positive story with you all because when I was going through it all I couldn’t find a thing!

Joey is the funniest happiest, chubbiest little monkey and what a long road it has been.

 

Good luck to you all.

     

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