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Raising Awareness: Ruben’s CMV Story.

Ruben’s CMV Story

Cytomegalovirus (CMV) is a well-known virus that is usually harmless. Sometimes it causes problems in babies if you catch it during pregnancy (congenital CMV). There is currently no vaccine for CMV available, CMV is a silent killer.

In the UK, 70% of the population has been infected by the CMV virus – and may have the virus, because it lays dormant in your system but can be reactivated due to a weakened immune system. Approximately, 1 in 200 children are born with CMV, and about 1 in 5 of these children will develop permanent problems, such as hearing loss which is the most common sign of the virus. Currently, there is not a standard test carried out on expectant mothers, rather it is only performed where a mother expresses symptoms of CMV to health care professionals. The effect of this virus is more widespread than Downs Syndrome, yet so many are unaware of it and the dangers it can cause to unborn babies.

In February 2019, I found out I was pregnant with my first baby. I was super excited, obviously scared but I could already imagine being a mummy and having my baby here with me. I was very happy. Unfortunately, I didn’t realise how unwell I was going to be or become. I had experienced a miscarriage previously, just before reaching twelve weeks, where I suffered from slight morning sickness, but this was unmanageable, for the first three months of my second pregnancy, I was constantly sick, exhausted, grey in colour and drained, the feeling can only be described as deathly.

"In the UK, 70% of the population has been infected by the CMV virus"

I didn’t expect any of this, usually I am a healthy, vibrant person, I never imagined that growing a baby could have such a big effect on my physical and mental health.

During my first trimester, I spent a lot of time to and from the Doctors, hoping that there was something they could do to explain or make my symptoms more bearable at least. On a lot of these occasions, my symptoms were ignored or simply classed as “morning sickness which most first-time mothers experience”, and therefore no concerns were raised for either the health of my baby or myself – I was fobbed off with “you had an infection, but this will now have gone” (it’d been six weeks since these blood tests were carried out).

At my twenty week scan, concerns were raised due to a reflection seen on Ruben’s bowels, which led to an appointment the following week with a consultant at Watford General Hospital. At this stage I was told numerous different things, my son could; be perfectly fine, have Downs Syndrome, Cystic Fibrosis, among many other health difficulties. This was a distressing time for both myself and my family, as we had no real knowledge or understanding of the extent of the difficulties Ruben was facing. The consultant arranged my first test for CMV at this point.

"More children will have disabilities due to congenital CMV than other well-known conditions including Down Syndrome, Fetal Alcohol Syndrome, Pediatric HIV/AIDS, Spina Bifida, Toxoplasmosis, and Zika."

I was seen by the same consultant four weeks later. I was given good news here – all of my blood test results had come back negative, meaning I was clear of infection, and my family history had been checked to ensure my baby was at no additional risk.

I later found out that the Watford General Hospital returned a positive result for CMV. When any blood tests are carried out by the NHS, the samples are first tested at the facility they are taken (Watford General Hospital), in my case and then sent to a second lab (Manchester Public Health Laboratory) for validation, to essentially confirm that the results gathered by the testing facility are correct. All blood tests in the UK go through this two-step process, the aim of this is to ensure correct results are communicated to patients, as well as facilitating in both diagnosis and treatment.

"Children born with congenital CMV may develop permanent medical conditions and disabilities including deafness, blindness, cerebral palsy, epilepsy, feeding and/or sensory issues, cognitive and developmental delays, and in rare cases, death."

However, when my samples were sent for validation, the lab opposed this result and informed my consultant that the tests were negative and that in fact, neither Ruben or myself had CMV. This was relayed to me by my consultant at the hospital – initially, this was a positive outcome for me. Then, he scanned me and had a look of concern. Ruben had barely grown in the time elapsed since my last visit at Watford General Hospital. He was approximately 300 grams underweight - Ruben only weighed 430 grams. At this point, I was referred to University College London Hospital (UCLH) and told to prepare for the event of miscarriage within the five days before UCLH could review my case.

From this point, my care was managed by UCLH. I had my first scan here on 5th August 2019 – they were concerned about the tests contradictory results, as well as Ruben’s weight, which was now 450 grams. The consultants at UCLH were confused by the mismatch in symptoms both Ruben and myself were showing – these test results should have offered some explanation into why both myself and my baby were so ill.

"1 in 200 children are born with CMV, and about 1 in 5 of these children will develop permanent problems"

The confusion here is that we DID have CMV Ruben had grown with this viral infection in his blood throughout his short life inside me. I was told that if Ruben was to survive, he would be here at twenty-seven weeks, but only if he had reached 500 grams.

I had a second scan at UCLH on 9th August 2019, Ruben had gained 20 grams in weight since our last visit which was a positive for me. I saw a highly experienced professor, Anna, who has been referred to as the ‘Queen’ of small babies – she was the first sign of hope I felt that I had throughout this process. She confirmed to me that, as soon as Ruben reaches 500 grams, he would be delivered via emergency C-section.

On Wednesday 14th August, I had my last scan with Anna and Ruben weighed at 490 grams. They gave me my first Steroid injection to help open up Ruben’s lungs, to prepare him for the C-section that was to follow. I was told to arrive back at UCLH the following day with my bags packed and ready to deliver. In the best-case scenario, we would be in the hospital from delivery until Ruben’s due date, 16th November 2019, if not longer. I was warned at this stage that Ruben could pass away during delivery or in the time between him being placed onto life support – essentially, to prepare for the worst also.

I had a further Steroid injection when I returned on Thursday. I delivered Ruben on Friday, August 16th 2019 at 2:17 pm, I delivered a beautiful little baby boy, who cried and weighed 496 grams of perfect cuteness. He was rushed off straight away to be put on all the type of support that he needed to survive, Ruben and I spent the night being monitored by midwives at the Elizabeth Garrett Anderson ward. I was sent back to my room where I hand expressed milk to be placed on Ruben’s mouth so that he could ‘taste’ his mummy’s milk for the first time.

As soon as Ruben was born, he was tested for CMV. I got to meet Ruben at 7:44 pm that day. He was really sick, and they had to do lots of things to ensure he was stable before he could have any visitors. The first time I saw him, he had the blue lights on him, in a tiny nest with ski goggles and a little hat on (which sleeps under my pillow every night now) – this was all to give him the best chance at surviving.

I didn’t get to see Ruben again until 7:20 am the next day. Over his first night, he was extremely poorly, his blood was very thin and he needed constant nutrients from the longline, and lots of platelets.

He was three days old when it was confirmed that he did indeed have CMV and antiviral treatment, that could have taken place during my pregnancy (if we were aware), was started. When I saw Ruben on this day, he was no longer wearing his Ski goggles, so I got to see his big brown eyes for the first time! Day five of Ruben’s life was one of the worst. He had developed further issues with his breathing and had to be placed on full ventilation support, as well as Nitric Gas to help him breath better. The consultant had advised me to prepare to say goodbye to my baby and to spend some ‘closer’ time with him, so I got to give the first kiss to my bubba!

Over the next three weeks, I barely left the Neonatal Intensive Care Unit (NICU) or Ruben’s side. There were ups and downs throughout this time, in terms of how Ruben’s health was progressing or deteriorating - the main concern was his breathing, but his milk tolerance was increasing by 0.5ml every twelve hours, he gradually gained weight – sometimes this would be in large amounts.

I had a notebook that I wrote in every night, about Ruben and our days together. I read him his favourite books, Monkey Puzzle and The Mousehole Cat, as well as a book full of nursery rhymes. I got to change his nappies and helped with building his nest (which gradually got bigger and bigger). I adjusted my life to living at the NICU with him – I sat next to his bed, prayed with a pastor daily and expressed his milk for him every three hours so he could suck the milk from mummy’s finger, even though he still had tubes in. During this time, lots of my family members came to visit and we had Ruben christened.

In the time we were here, about seven babies were admitted and discharged to be ‘normal’ babies with their families, either in the wards or at home. Unfortunately, Ruben and I never got this chance.

Up until day twenty-six, Ruben’s health was still improving and worsening at the same time. This was the first day I got to hold my baby, not properly, but as his bedding was being changed by two of the nurses in the NICU. When I left that night, Ruben was still really poorly and had to have a lot of attention from the doctors and nurses.

On day twenty-seven, I was on my way to the hospital to see Ruben, when I received an urgent phone call, telling me to come as quickly as possible to the hospital as Ruben’s condition was deteriorating. When I arrived to see my baby, he was no longer wriggling around in his nest as he had been for the past few weeks – I could notice the difference myself. I spoke to him and he opened his eyes once to look up at me and never opened them again.

At around 12:30 pm on the 12th of September 2019, he was taken off the ventilation machines and placed into my arms where he passed away, peacefully.

Cause of death, Cytomegalovirus infection, extra prematurity, extreme growth restriction and chronic lung disease today would be Rubens 6 month anniversary.

Written by,

Lila Mclaughlin Rubens Mum.

Note from the editor,

So much more needs to be done in terms of raising awareness about CMV, most people do not know the risks of this virus and how dangerous it can be, many people are completely unaware that they are currently carrying it, the NHS needs to speak up about how dangerous the virus can be during pregnancy. But still so little has been done about the CMV vaccination. more education needs to be given on the virus so we can strive for more prevention, the virus is a silent killer due to the virus causing so many unexplained miscarriages in women due to lack of knowledge. Many children suffer from the effects of CMV throughout their entire lives, the current screening test for CMV needs to be updated and improved by health care professionals, vaccines need to be given to patients at the correct times to create fewer risks for mothers and their babies, please share Lilas story to help inform others.

CMV Charities

Further Reading


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