After years of fertility treatment and associated heartache falling pregnant with our first son, we had just started the process again when I discovered that I was pregnant.
Overjoyed, I waited a couple of days to tell my husband the miraculous news to coincide with our 4th wedding anniversary. He was equally delighted and we were excited to think about becoming a family of 4.
The pregnancy was very normal and already having a nearly 2 year old, I enjoyed worrying less about the pregnancy.
Life changed forever for us at the end of November when I was 17 weeks pregnant. My husband came home from a GP appointment after he had been experiencing problems with night sweats, fatigue and unexplained weight loss. Following further blood tests the GP reported that my husband had a primary infection of CMV.
Neither of us had ever heard of CMV and my husband came home with printed information from the CMV Action website. Reading through the information and learning about all the potential effects to our baby, my heart just stopped.
Feeling pretty hysterical I contacted my community midwife who agreed to a blood test for me. Whilst taking the test she tried to reassure me about my total lack of any symptoms, how low the risks and statistics were and that it was unlikely I hadn’t had CMV in the past (my mum was a primary school teacher for years and I worked in healthcare). I remember her saying, ‘it's either going to be nothing at all or a really big problem’.
The wait for the results felt inordinately long and I resorted to calling and messaging almost daily to try and expediate. I ended up getting the results from one of the obs consultants who I was booked to see for birthing discussions. After her lengthy talks with microbiology, they confirmed that I had CMV, but it looked like it was a previous infection. I felt able to breathe again, but they wanted to test my blood from earlier fertility tests for confirmation over some uncertainty.
After a week of torturous waiting we arrived for our 20 week scan with one of the fetal medicine consultants. We found out that we were having a boy! All looked well with the scan but the blood results were back and they weren’t good. They showed that I had a primary infection of CMV during my pregnancy. We were devastated.
It was agreed that we would have 4 weekly scans to check his development. After a very tense Christmas we had our 24 week scan, which again looked promising and I was referred to St George’s Hospital Fetal Medicine Department. We were invited to attend an appointment at SGH the following day. Here we met the specialists and left feeling terrified but ‘cautiously optimistic’.
Over the next 3 weeks we had numerous ultrasounds, all of which appeared normal and provided some semblance of hope, but never lessened the worry. We consented to an amniocentesis at 24 weeks which showed that our baby had congenital CMV, but we were again reminded that the risk of him being affected by the virus was still low. The next stage was a cordocentesis at 25 weeks, the results of which again gave us hope. His liver function and platelets were all normal and the viral load was extremely high, which we were reassured was a good sign as it suggested that he had only caught the virus a couple of weeks previously, when he would have been more developed. Keen to try anything that could help, I started a high dose of Valaciclovir, an anti-viral medication.
Next came the fetal MRI results, which strangely neither my husband nor myself were worried about. Our world changed forever on Tuesday 29th January. I received a call from the fetal medicine team at SGH at 9:30am asking us to come in immediately, they had found something on the MRI.
Two double-blinded reports of the MRI showed that CMV had caused significant areas of calcification in his brain and numerous sulci hadn’t developed. The doctors informed us that if he were to survive the pregnancy and birth our son would have significant neurological disability and would require 24-hour care throughout his lifetime.
Devastated, numb, horrified. No words could ever begin to describe how we felt at hearing this news. We had been given worst case scenarios from the outset and had already discussed what we would do if the unthinkable occurred. We made the single most difficult decision of our lives and agreed to terminate our much loved and wanted baby to try and prevent him a lifetime of pain and suffering.
I was given a tablet and asked to return the following morning. That was the last time we got to see our baby boy moving on the screen and to hear his heartbeat. This was our first heart-shattering time of saying goodbye and sorry.
Later that day I was admitted to my local labour ward for induction. Despite being in a separate specially designated suite, we were surrounded by pregnant ladies having their healthy babies and hearing newborn cries. The next couple of days were a blur. All the while, my little boy was silent and unmoving in my womb. We were given information packs about post mortems and funeral arrangements.
Samson was born at 10:45pm on 1st February in a snow storm weighing 940g aged 27+2. Despite knowing that he had already died, I still couldn’t comprehend the silence when he was born.
After 16 precious hours, trying to memorise every single detail of him, it was time to say goodbye for a second time. Leaving the labour ward without him was like moving in slow motion and all we could do was sob.
Despite dealing with all of the grief and guilt, we had his funeral to arrange and all of the associated decisions. He was buried on 20th February, our third and final goodbye.
Now, all we have to remember our beautiful Samson are some photographs, hand and feet casts and a memorial stone.
There will never be words to describe how much CMV has taken from me and my family, and mostly from our darling Samson. I spend every single day of life questioning our decisions and thinking about ‘what ifs’. I couldn’t and still can’t believe that my life has been so thoroughly devasted by a virus I had never even heard of until a few months ago.
I am so hopeful that someday very soon there will be much better awareness of CMV and a vaccination so that no-one else has to suffer the heartbreak we have. I only wish it had been sooner so that our darling Samson was still with us.