September 2012
Matilda – Mighty in Battle.
The meaning of the name Matilda is “mighty in battle”.
So, when our second daughter was born on September 23rd, 2012, it wasn’t any coincidence that we named our daughter Matilda. She is our mighty warrior.
Matilda had contracted a virus called Congenital Cytomegalovirus (CMV). CMV is a common birth disorder which affects around 1 in 150 newborn babies. Although CMV is a leading cause of hearing loss and a major cause of disability in children, very few pregnant women are aware of the risk it poses. I was one of those pregnant women.
Just before my 20 week scan, I had developed uncontrollable itching on my feet and hands. My midwife advised me to go to the Royal Free Hospital for blood tests. Some women do experience severe itching during pregnancy, a condition called Cholestasis, but commonly during the last trimester of pregnancy when hormones are at their peak. At only 18 weeks pregnant, the consultants were confused as to what it could mean. A series of blood tests over a 3 week period couldn’t find any issues with my liver, so the consultants decided then to run an infection test on my blood.
During this time, we had our 20 week abnormality scan which was fine and we had found out we were having a little sister for our elder daughter Elodie – all was well in the world.
Yet, early June, I received a phone from the Royal Free which brought our world to a crashing halt. Cathy, a specialist midwife, called to tell us that I had tested positive for CMV. CM what I asked? Cathy then went on to tell me that CMV can cause a serious of birth defects from brain damage, development issues and hearing loss. I remember feeling completely sick.
The next hour was a blur. The lead consultant and specialist midwife explain that I had tested positive for primary CMV infection. This meant that I had no antibodies to CMV prior to becoming pregnant. They went on to explain there was no cure, no vaccine, no pill or medication I could take.
The consultant explained they needed to perform an amniocentesis to see if the virus had been passed onto our unborn baby. With the risk of miscarriage associated with an amniocentesis, even this first decision was stressful, but we needed to know. Statistically, only 40% of foetuses are infected with the virus so we waited for 2 days with some hope.
It wasn’t to be the case. The result arrived two days later that our unborn baby daughter now also had congenital CMV.
There was no definitive test to know how our unborn baby daughter had been affected. What the RFH did offer was monthly ultrasounds and weekly hospital appointments for check ups, to detect for foetal abnormalities as the best indicator of asymptomatic baby at birth. The team also arranged a meeting with Professor Griffiths, the UK’s leading expert in CMV. It was great to meet with an expert and talk through what our odds were.
My consultant blood samples from my initial pregnancy booking. Taken at 11 weeks, my bloods no sign of a CMV infection. The question was now when did I contract CMV?
During this time we did our own research. We couldn’t let it rest and thought there must be something we could do to help our baby. We starting speaking with Professor Giovanni Nigro and Doctor Stuart Adler about their research into the treatment of primary CMV pregnant mothers with hyper immunoglobulin (HIG).
In the UK, because HIG had not been used in a controlled testing environment, it is not a treatment offered by the NHS. We were aware that it was offered in Germany, Italy and in the US. HIG has been showing very positive results in small trials in the treatment of CMV in pregnancy and we felt the HIG outweighs risks of long-term sequelae in asymptomatic congenital CMV infection.
10 days later we were on a plane to Rome for a day – our leap of faith trip. I had HIG treatment intravenously over the course of four hours. During that time, we sat and chatted in great depth to Professor Nigro about CMV, pregnancy and the timeline of my infection.
Combined with my avidity score at 21 weeks and the CMV DNA shedding load (of the amniocentesis test) we could put my likely infection somewhere around 18 weeks. The severe itchy feet and low iron levels were my body’s reaction to the CMV virus.
Professor Nigro also noticed that I had a reactivation of Epstein-Barr as evidenced by the blood work. He said there was some evidence that suggests when EB and CMV are both active, the chances of placental transmission of CMV are greatly increased. Our viral load from the amniotic fluid was low, which is a good sign. Encouragingly, Professor Nigro had never seen serious complications in women who have had the HIG treatment and who had contracted the virus after 16 weeks.
Between June and September 2012, we have monthly scans and I spent on average 4 hours a week with the team at the Royal Free. I had a foetal MRI to further examine Matilda’s brain, liver and other organs. The scans and MRI were very positive. By earlier September, the general consensus was that the chances of neurological complications were low. With all prenatal CMV testing, nothing is 100% so we continued our wait.
2 weeks before her due date, Matilda decided enough was enough! On September 23rd, 2012, Matilda Rose was born after an uncomplicated labour. Weighing in at 3kg, she was small and just perfect. She showed no outward sign of being affected by CMV.
The problem was that our notes and situation wasn’t shared amongst the medical staff looking after us post-birth. The stress could have been reduced greatly if we had been given extra support and the communication between the medical professional was better. I had to tell midwives and doctors of the tests needed, including taking a urine sample from a newborn baby. The junior paediatricians had not read my CMV notes and were not aware to take a blood test from Matilda at birth. We were told that the placenta was taken away for testing yet we never heard anything about this.
Surprisingly, no one took any precautions about looking after a new born with CMV.
We were not told when the newborn hearing test would take place and given the concerns, we had hoped that my husband would be there. To add to our worries, again the newborn screener had not read my notes so wasn’t aware that Matilda had congenital CMV. There was no “bed-side” manner or sympathy to our situation. I held my breath as the test took place, feeling very alone and isolated. Matilda, my little warrior, passed with flying colours.
In the weeks that followed, we had more blood tests, eye tests and a cranial ultrasound. We broke down in tears when our Consultant told us that her brain looked perfect and we should go and start enjoying our baby.
At 4 weeks of age, Matilda had in-depth hearing tests at the Nuffield Ear and Throat Centre in London. Over 3 hours, these tests showed all the different levels at which Matilda responded too. Another tense wait but the results were positive – Matilda’s hearing was within the normal range.
We continue to have follow up paediatric appointments and hearing tests, at least until Matilda turns five. While she was born asymptomatic CMV, Matilda still has the risk of developing hearing loss but I consider us to be lucky. Matilda is now 20 months old and is a completely wonderful little person. She is my little miracle and we are blessed to have her in our lives.
I was dumbfounded to have never heard of CMV and the implications for pregnant women. This is why I am now a Trustee and Head of Awareness at CMV Action. Until there is a vaccine and there will be one, we need to continue to raise the awareness of CMV.