My name is Julie Anne Stansfield and this is my story of when and how CMV changed my life.
On the 12th February 2010, I found out I was pregnant, it seemed like a natural progression having been married for 8 months and we always wanted a family. We were surprised it happened so quickly but we were over the moon. We kept it quiet only telling immediate family until our first scan. This soon arrived and on the 7th April we found out we were expecting twins due on the 15th October.
This was a shock and not something we expected but we were happy albeit a little scared. I was well and so were the twins, pregnant life really suited me. I always said I was lucky because I suffered no sickness, heartburn, indigestion or anything else and as the scans showed throughout my pregnancy my identical boys were growing well. At my final scan on the 22nd September they told me the boys were a good size and if I hadn’t already had them I would be induced on Tuesday evening the 28th September.
My last weekend of freedom came and went and before I knew it I was preparing to be induced. Wednesday morning I went into labour and 5 hours later at 3.10pm Finley James Stansfield was born, his brother Harley Thomas Stansfield arrived by emergency C-section 28 minutes later at 3.38pm. Harley spent 4 hours in SCBU before being reunited with his mummy and brother. The boys were amazing and I was crazy in love with them. The twins were soon discharged but stayed with me in hospital till I was well enough to leave and we all arrived home on the 5th October. It slowly started to sink in I was a mum when I was up breasting feeding at 4 am and we held a champagne reception for them so our family and friends could meet them that weekend.
It wasn’t until later that month that I received a phone call to say that for some reason my boys had missed their new born hearing screen and could we take them into hospital for this to be done on the 4th November. We weren’t too concerned, just pleased the error had been realised. At this appointment no hearing was picked up on either left or right ear on either twin, we were told this was common and could be due to fluid in their ears from birth.
We made an appointment to attend audiology on the 11th November where this could be checked. The day soon arrived and I took the twins to the hospital for again what appeared to be routine testing. I wasn’t concerned at all but my calm was soon replaced by fear and anxiety when we were told that both our children couldn’t hear anything below 30 decibels and we would need to go back to see the consultant and have more tests the following day. I left hospital dazed and confused to what was happening surely my children could hear me? It must be something simple that could be rectified?
We went home and when they were sleeping banged a metal spoon on a roses chocolates tin right above their heads as loud as we could........nothing. All we could do was wait until the following day. On my way to the appointment, I picked my mum up from work to come with me. 6 hours of testing later we found out the news we were dreading Finley and Harley were deaf, both profound in their left ears and severe in their right.
My world came crashing down around me I couldn’t think straight. How could this happen to both my beautiful children? I was crushed and the thought that in their 6 weeks of life and even before they were born they had not heard not a single “I love you” it destroyed me. The rest of the appointment went by in a haze, I met with the teacher of the deaf (whatever is one of those I thought) and the boys had moulds taken so they could be fitted with hearing aids at a further appointment. We left at 6 pm with information and another appointment booked. I could hardly drive my mum had to talk me through driving and directions. We left her car at work because I wasn’t safe to drive on my own. That evening we had friends round as a distraction and because there was nothing we could do. It wasn’t until I was alone that night that I really started to crumble. I felt like all my hopes and dreams for my children had been destroyed. I didn’t even know any deaf people never mind an understanding of it. Would they sign? Speak? Go to school? Listen to the birds? Music? Or hear the lifetime of I love you's I was desperate for them to hear. What would life hold for them now? One thing always kept me strong they had me, our family and always each other. I began to research things on the internet throughout the night because I couldn’t sleep. I found the NDCS a massive help and soon felt like I could do this, it is just different but we would learn together and I would support the boys every way I could.
Snow delayed the agony of returning to the hospital but we eventually returned on the 8th December. A lot had happened in that time, more research, library trips and starting to learn sign language. The first thing I learnt was twinkle twinkle little star, I was so proud of myself. Anyway back to the 8th December another long day of tests and talk soon turned to the reasons why my children were deaf.
This is the first time in my life I had heard of Cytomegalovirus (CMV). It wasn’t a definite cause it could be genetic or maybe something else but we had a starting point. You can imagine my horror when I found out the amount of problems CMV could cause, deafness, blindness, brain damage and other physical and mental disabilities. CMV affects most people and is a very common viral flu-like illness which most people are exposed to during childhood. Not everyone gets it however and if you have not previously had the infection and therefore not immune and get it during pregnancy this can cause damage to the unborn child. Another painful blow for me, how could my body let this virus hurt my unborn children and yes you guessed it because they are identical they have been affected in the same way. How could we find out if this was the case?
Urine samples were taken from the boys to be checked for CMV as well as blood from me and also the boy's neonatal blood samples and my antenatal samples to see if CMV was evident at the beginning and now. We were referred to the paediatrician for the results. The most exciting but nervous part of the 8th December was that my children would be fitted with hearing aids for the first time. Would they hear me? Could we tell if they could hear us? The hearing aids were put in and the boys were calm and settled and we were having a joke as we nervously tried to remain positive and when we laughed Finley let out his first ever giggle. Tears were flowing, I couldn’t contain my emotion. It was very exciting but I was nervous and heartbroken at the same time. We made another appointment to go back and we were also told that the teacher of the deaf would be coming to see us every two weeks.
Our next major appointment came in January with the paediatrician, would we find out if CMV was the reason? We soon found out that the twins were carrying CMV and my antenatal bloods tested negative to ever having it and now I tested as having had it. For me, this seemed pretty certain that I picked up CMV and infected my unborn children with this awful virus. Yet again I was a broken woman how could this happen? What if there is something else wrong with my boys? The paediatrician explained some of the next steps we now had to take to see if anything else was wrong. This involved, yearly eye appointments at the children’s hospital, an appointment for them to be put under general anaesthetic in August for an MRI scan, an ECG and physiotherapy every month and as they grew. Speech and language therapy and regular audiology appointments and normal appointments for jabs etc, all times two.
I couldn’t actually take in what was happening or going to happen or what the potential outcome could be. We went to my mum and dads and researched what we could. My brother came with some information he had got from his boss at the hospital which helped greatly. It all just seemed very scary the, what ifs, were endless and the guilt that maybe I had done something wrong was killing me. At the appointment that day in January I also found out that because I knew my children were carrying CMV and would do for some time we had to try to avoid pregnant women where possible. That didn’t mean don’t take them out but just be careful letting pregnant women handle my boys. Life very quickly became a roller coaster of appointments and emotions but at each of the appointments, it was positive so far.
We soon started to plan to get our little boys christened in June. We had six Godparents my brother Andy, my ex-husband's sister, two mutual friends Iggy and Matt and my best friend Rachel and her partner Leigh. Rachel and Leigh were a huge support always but especially since I had the boys. Rachel a few times attended appointments with me. Rachel was bridesmaid at my wedding and we had been close friends since we were ten years old. I didn’t become aware of this till later but knowing all about the boys, Rachel found out she was pregnant at the end of May 2011and kept it quiet as lots of people do.
The boys were christened on the 26th June and my beautiful friend had to avoid contact with her new Godsons as tough as it would have been for her. A couple of weeks later she told me she was pregnant but when I got back from holiday and after her second scan at 13 weeks pregnant we knew we needed a chat. We spoke at length about CMV and what this meant for our immediate friendship and her contact with the boys and we both decided that Rachel should ask the midwife to be tested for CMV. We both thought there were only two outcomes either she has already had CMV before and could continue to see my children or she hadn’t had CMV and would need to stay away from us until her baby was born. A week or so later came the phone call none of us could imagine, my best friend was actually infected at the time with CMV, neither of us could believe it. I was in bits again, had I really infected the boys and then they have passed it onto Rachel? A huge heart break again as Rachel explained that she could no longer see us as advised by the doctors, two friends going through hell that needed each other more than ever before. Rachel would also have extra scans throughout her pregnancy to keep an eye on her baby but there was nothing we could do but wait. This was the beginning of August and she wasn’t due until February.
We spoke regular for updates but on the twins first birthday when I hadn’t heard from her I was concerned because she had had a scan the day before. Late in the afternoon, I and my family were sat in the sun enjoying the twins first birthday when Rachel pulled up in the car. I have never run so fast in my life as I did into her arms that day. I was sobbing I couldn’t believe at the scan the day before she had been given the ok to see us. She had CMV so couldn’t get it any more than she already had it I guess. We had the best few days celebrating my sons and her Godsons birthdays and it was huge knowing we could be there for each other properly again. Rachel never once blamed me or the boys, it might not have been us but we definitely felt like we were in it together. Oliver was born to Rachel and Leigh on the 5th February 2012, his newborn hearing screen and brain scan confirmed Oliver had not been infected by CMV even though Rachel had carried it during pregnancy. For me, it was a massive relief I never wanted anyone else to go through what I had with my children.
The ECG the boys had showed no problems. The MRI scans showed CMV had been in the brain but no obvious damaged caused. The boys learnt to roll over, crawl, climb and walk and were then discharged from physio. They were also discharged from the eye clinic at the age of three years.
2013 saw my boys say their first word, they told me they loved me for the first time, said mummy for the first time, they started nursery and played a part in their first Christmas concert.
2014 saw more words, phrases, numbers, colours, getting discharged from the cochlear implant team who said “why fix something that doesn’t need fixing”, we were told Finley is no longer carrying CMV and I also passed my level 1 BSL.
2015 sees Harley hopefully getting the all clear of carrying CMV, the boys start full time school in September at a mainstream school with a deaf unit and the correct support, I will complete my BSL level 2 and hopefully a teaching assistant course so I can work alongside children with special needs.
Oliver, Finley and Harley are the best of friends and see each other often. Rachel and I are as close as ever, she looks after me and is like my big sister we both love our friendship, our children and each other’s and motherhood.
Myself and Lee would like to take this opportunity to thank my mum Lynne, my dad Paul, my brother Andy, his partner Michelle, Lee’s dad Phil and his partner Liz and all our family and friends that have helped and support me and the boys in every way they could.
Finally, my boys have overcome every hurdle thrown in their way, they are amazing and I’m proud to be their mummy. It’s still not always easy and I have my wobbles and worries and my children might be deaf but they are mine and we stand and fight together as a family and I wouldn’t change it or them for the world. Family Stansfield are strong and won’t be defeated or defined by CMV.
I really hope this story helps others and raises awareness. Thank you for reading and sharing. Julie Anne, Finley and Harley xxx