The back story

I'd like to start my first blog by saying hello to anybody who has taken the time to read this. A little bit about me before I get to it. My name is Lucy. I'm a 24 year old mother to two beautiful children. Leo is 3 years old and is a real little character. Bouncing and bubbly, he brightens up everybody's day with his funny little quips! And then there is Anna, my gorgeously beautiful 6 month old Christmas pud. My main reason for starting this blog. Many people I know will have seen a fair bit on the various social media platforms I use about Anna just lately. A lot of people will be wondering what is wrong with her but won't want to ask for fear of appearing intrusive or nosey. So I have decided to start this blog. As a record for myself. A way of sharing information with people that care. And a way of raising awareness for the illness that has become a massive part of our lives.

On the 27th December 2013 at 6:36am weighing 7lb2.5oz, our little girl made her speedy entrance into the world. We left the birthing pool and Anna had her initial newborn check. The first thing that was noted was her "low birth weight". I know what a lot of you will be thinking, 7lb2.5oz is fairly decent birth weight, however as Leo was 9lb13oz born they were expecting me to be carrying another whopper! A set of observations showed that her body temperature had dipped a little. While indulging in a little skin to skin to try and raise her temperature, Anna started choking for the first time. Although I panicked a little, I guessed this was due to quick delivery and meconium filled waters she had been born in. Anna was little over 2 hours old when she had her first hearing check. She failed both ears, but we were not too worried as she was still very new and probably filled with gunk! We were kept in for just over 24 hours as precautionary monitoring was required. The following morning, another hearing test was completed. Her left ear passed, her right ear failed. Still not overly concerned, we were asked to return a week later for further testing. And then we were sent home to begin our life as a family of four. The choking continued, and I mentioned it to anybody who would listen. I was reassured that it was normal for this to happen. Keep her upright, take her into steam filled rooms, it'll clear eventually. Her heel prick test for cystic fibrosis came back as normal, so I once again started to relax a little, thinking maybe I was being a little too over protective.

Around a week later we returned to the hospital for a more in depth hearing test. The equipment wasn't working properly, but the response that was being picked up showed that Anna had a moderate to severe hearing loss in both ears. We were referred to the audiology department at Birmingham Childrens hospital. She needed to be asleep for the further testing, however she would not settle, so the decision was made to come back for a sedated hearing test. By this point Anna was around 10 weeks old. The choking was continuing and I noticed she didn't seem to be developing at the same rate as Leo had. Her head support was still very poor, and her hand were still all curled up like a newborns. She was also having trouble gaining weight. I was exclusively breastfeeding, and beating myself up relentlessly that she didn't seem to be gaining as well as we expected. We were put on fortnightly health visitor visits, so that they could keep an eye on her gain. I introduced 2 bottles of formula a day for peace of mind as I was losing faith in myself and my milk producing capability, however she still seemed to be struggling to catch up.

A few days before Anna was due to have her sedation, we had a pre-op assessment. I mentioned the choking to the nurses, along with my concerns about her development and her weight gain issues. They agreed that something was not quite right. I was advised to return to the family GP and request a full paediatric review under one of their consultants. It was at this GP appointment that the doctor noticed Anna had microcephaly - her head was not growing in accordance to the usual rate. She referred us there and then. The health visitors were advised that head circumference should be checked at every appointment. In the mean time, the audiology department contacted us and said based on the results they had managed to obtain, they wanted to issue Anna with a bone conduction hearing aid until she was old enough for the full test to determine the extent of her hearing loss. 

We received our appointment with the paediatrician for the same day we got Anna's hearing aid. We explained our concerns to the paediatrician, who gave her a looking over. We all sat back down, when the paediatrician said something we did not want to hear. "I hate having to tell any parent this but I think there is something wrong with your baby." I don't remember what was said in great detail after this. She was going to refer us for all sorts of scans and tests. She wanted to do genetic testing. We were to go and have blood and urine samples taken there and then. Then we were to take her to heart investigations where she would have an ECG. I cried. My partner cried. My aunt, who was with us, cried. The best thing about the day was seeing Anna's face when the hearing aid was switched on for the first time! It was extremely bittersweet. Our little pumpkin could hear me for the first time, but we also realised this was just the beginning of a very tough time for us.

At our next health visitor appointment, I explained what had happened. My health visitor was fantastic. Straight away, we were referred to physiotherapy, the early years special educational needs service and for a swallowing assessment. One by one we received our hospital appointments. The first was an echo cardiogram on Anna's heart. Next was a barium swallow on her stomach, which showed evidence of reflux. Then the MRI on Anna's brain. We were referred to the dietician and ear, nose and throat specialists. Our lives suddenly became a barrage of hospital appointments, but we would have done it 1000 times or more if it meant our baby had a chance of diagnosis. 

On the morning of Tuesday 15th July I received a phone call from Anna's paediatrician. She began the call asking how Anna had been, whether there was any progress. I told her how her weight gain seems to be improving. We have started weaning and she seems to be enjoying it. Her head seems to be slowly creeping up the chart and on to the 0.4th percentile. How much she smiles, responding to our expressions and playing. How she follows her big brother around the room with her eyes, watching his every move intently and letting out sighs and giggles as she does so. How she's trying so desperately to hold her head up, how she tries so desperately to grab for her toys. But she's not yet babbling much. Despite trying, she is unable to grasp things. She cannot roll from front to back. She can only hold her head up for short periods of time. The paediatrician then told me she was calling with some of the results of Annas tests. "Some of the results are not normal. The stomach scan shows reflux. We need to start her on gaviscon and ranitidine as soon as possible. I'm sorry to have to tell you this over the phone, but her brain scan was not normal either. Her brain has a smooth surface and there are gaps.." at this point everything has become a little blurry. I remember her saying she had whittled a diagnosis down to 3 possibilities. One was a neurological disorder, but having sat down with a specialist in the field that morning they had pretty much written that one out. A second possibility, I cannot quite remember what, did not seem too likely as not everything matched up. The third and most likely cause is that I had been exposed to a virus at some point in my pregnancy that has caused permanent brain damage. I never would have known, asymptomatic, nothing anyone could have done. The virus is called cytomegalovirus. Or CMV for short. We are to go back tomorrow, the 17th July, to discuss what this means for Anna. How it will effect her. And to give consent for a further blood test to check for immunity to this virus in her blood. 

I am numb. It doesn't feel like this is happening to us. It is not real. I am trying to stay practical. I have an idea about what this COULD mean for us. I have done a fair amount of research since yesterdays phone call. But I do not want to think about anything until we have tomorrow out of the way. I am hoping that this blood test will give us the answers we so desperately need. Whatever happens, she is still OUR baby. She is the same baby today as she was last week. She is so happy, I can honestly say I have never come across a baby who is so delightful to be around. And I can tell she knows how much she is loved and adored by everybody who has had the fortune of meeting her so far. I don't want to get my hopes up. I am scared that if I do, I will not be able to cope anymore. She is a wonderful child who means more to us than she'll ever know. We'll get there, as we all have each other, and that is all that matters. So there you have her story so far. As soon as I feel up for posting tomorrows news, I shall. Forgive me if it takes a while. I will also post a further entry about CMV at some point. I am using this blog as a way of recording what happens when. Dates, appointments, feelings, progress. I am posting this blog in the hope that one day, Anna will be able to look back and see how far she has come. I am posting this blog to keep all of my loved ones updated, and to educate people about CMV. If anybody wants to know anything at all, please do not hesitate asking Sam or I, we will not turn you away, we will not begrudge you for asking. We are aware that people are concerned and intrigued. And the more we can share, the better.