My name is Alex and this is the story of how I came to learn about CMV.
January 13th 2014, I was stood staring at the positive pregnancy test in my hand. After 5 months of trying for our second baby I finally had the good news I had been waiting for. My pregnancy was uneventful in the main, I enjoy being pregnant and luckily don’t suffer from sickness.
The only thing I had to bare was swollen feet and the odd migraine but to me, that was a small price I was happy to pay, particularly every time I felt the little prune squiggle and turn.
At 32 weeks I had a sudden, unexpected and heavy bleed, 48 hours after being at a friend’s wedding on one of the hottest days of the year I put this down to “over doing it” as I was still working and also chasing after my 2.5 year old and mad spaniel. However because of the amount of blood I was losing decided it best to go and be checked out in hospital.
On Sunday the 27th July, at 8.28 to be precise (I still have the carpark ticket!) we arrived at the hospital and duly headed for the maternity ward to be triaged. I obediently peed in a bottle and produced my pad for the midwife to inspect, as I handed both to her I saw the faintest hint of panic flash through her eyes and after directing us through to a cubicle I could then hear her on the phone saying shall I bring her round.
Next thing we knew I was being taken through to the delivery suite for “monitoring”. Feeling slightly dazed I lay on a bed whilst a midwife and doctor told me that a number of things were about to happen pretty quickly but they would explain why after.
I was hooked up to the fetal monitoring machine, a blood pressure machine cannula was placed. Shortly after this, they gave me a steroid injection.
I heard the words delivery but thought I had misheard, I was 8 weeks off my due date, still working and by no means ready for my second child to arrive. I thought I must have been mistaken. I mean, I am late for absolutely everything and had already had a previous textbook pregnancy and lovely labour. I wasn’t in pain, I wasn’t having contractions, in my mind this baby was just objecting to mummy dancing the night away at a wedding 2 days ago.
As the minutes ticked by the bleeding didn’t stop, at close to 500 mls of blood lost, the decision was made that the baby needed to be delivered. There wasn’t time to move me to the sister hospital which was more equipped at dealing with babies under 34 weeks. I was prepped for c section and strangely still felt incredibly calm and unfazed.
Thanks to the fantastic staff supporting and informing us I put all my trust of saving me and my baby which was apparently coming that day in their hands. For me, there was no doubt that we would both be fine. The most scared I was when they put a second cannula in my arm for the reason that if I continued to haemorrhage during or after the c section it was likely that my veins would collapse and they wouldn’t be able to get a transfusion into me. For a split second, I thought “oh sh*t I could actually bleed to death here”. However, we were taken through to theatre, my husband wearing scrubs and warned that if the procedure didn’t go according to plan and I needed a general anaesthetic then he would have to leave. I could see the panic in his eyes and for that reason tried not to cry as the anaesthetist showed me the exact position my spine needed to be in for the epidural to be administered.
At 12.27 a baby girl was delivered, after seconds of being exposed to the outside world she let out the biggest scream at which point my husband and I broke down together in tears. While I was being stitched up our daughter was taken off to scbu, my husband followed her in order to meet her and to be able to bring a photo back to me of what my baby girl looked like.
She was a tiny 3lb 12oz but breathing on her own with no help. I, the doctors, anaesthetist and midwife visibly relaxed. The c section had been a success, my baby was doing well and they had stopped my bleeding. All I had to do now was get my head around the fact that I had a July baby not a September baby as we had thought and also the fact that she was a girl, as I was convinced I was having another boy.
Later that afternoon while I was getting the feeling back in my legs the Advanced Neonatal Nurse Practitioner who had been present at the birth came to tell us that they were transferring our baby girl (still no name) 15 miles from the special care baby unit to the Trevor Mann baby unit at the Royal Sussex County in Brighton. This was just a precautionary measure as they were more equipped at dealing with babies under 34 weeks and she had a small rash on her back that they wanted looking at.
I now had to deal with the fact that not only should my baby still be inside me, that I hadn’t met her yet, held her or seen her face but she was going on her own in an ambulance with strangers to another city. I was able to put a hand into the incubator and stroke her tummy but this was the first and only contact that I had had with my daughter so far.
The following day I was transferred to be in the same hospital as her. Dazed, confused and 24 hours post c section, I stood looking at this tiny person bathed in blue lights from the 7 uv lamps they had on her to combat her jaundice.
I was told that she had low platelets and that the consultant wanted to speak to me. I was told that because of the rash she had, the low platelets and the jaundice, they suspected she had something called CMV, which I had never heard of. The consultant advised me not to google this, and to this day I haven’t. He warned that we could be looking at blindness, deafness, learning difficulties, physical impairment…the list went on but he wasn’t able to tell me what the damage would be. They did a lumbar puncture on her to test the spinal fluid to see if the virus had crossed over into her central nervous system.
By now we had named our baby Evie Gabriella and were waiting for any news or small piece of encouragement that she would be ok. The general feeling I got was that they didn’t know much about the treatment or side effects of CMV, particularly in premature babies. The lumbar puncture results came back to reveal that the viral load in her system was 47,000,000 copies but mercifully was not present in her spinal fluid.
A sight test was done which showed some shadows at the back of the eye and the decision was made to start her on an IV course of Ganciclovir. This was all completely foreign to us and I for one look back at the first few days of her life as being a complete blur. After several platelet transfusions and 2 days under the lamps her platelets were coming up and bilirubin levels coming down. We were transferred back to scbu where she stayed for 5 weeks fighting to keep her neutrophils above 0.8 whilst on the treatment.
At 35 weeks she failed her first hearing test but I wasn’t concerned as was told this was fairly normal and I was convinced I had seen her startle at loud sounds on the special care unit. At 10 days old the time had come for me to be discharged. I battled for days with having to go away and leave her, ignoring every maternal instinct of not being able to pick her up whenever I wanted, take her home, get to know her, her sounds, her smell, her touch. But I had no choice. I had a 2.5 year old at home who needed me and she was being medically well looked after.
At the beginning of September, we were finally given the news that her neutrophils were stable enough on the medication for her to be able to come home. Finally, after 37 disjointed days, we got to complete our family.
A second hearing test was arranged which proved that she is profoundly deaf in her right ear. I felt a range of emotions on learning this but now feel lucky that she at least has one good ear.
Evie is 6 months old tomorrow and in that time has been in 5 different hospitals, she has had 3 bouts of bronchiolitis and needed intubation on one occasion. She has had blood tests at least fortnightly to check drug levels, neutrophils and liver function, endured chest physio, hearing tests, eye tests, brain scans, CPR on her first bout of bronchiolitis when she stopped breathing on me on the way to A&E and I had to give her rescue breaths before she was whisked off to resus. But through this all she is the happiest, most content little baby with a beautiful smile and gorgeous character.
We don’t know what the future will hold for her but for the time being feel lucky that she is coming through this with partial hearing loss not full and at the moment is growing and developing as she should. Every day she makes me so proud and has already taught me so much about myself and life. She is a gift and I am blessed to have her.