Back to Stories
Calum's Story
"Mark and I married when I was 28 and began planning our family..."
After trying for nearly a year I fell pregnant. I was extremely careful to do all of the right things when I was pregnant – I took my folic acid, ate well, didn’t have even a sip of alcohol, and didn’t consume any nut products as I have a family history of allergies. I didn’t have any pain relief in labour as I didn’t want to do anything that may harm my baby. I gave birth to a little boy who we named Ellis.
When Ellis was almost two I fell pregnant again and was so overjoyed! I felt sick from being 5 weeks pregnant to 14 weeks but overall had a good pregnancy. We encouraged Ellis to bond with his sibling – getting him to sing ‘Twinkle Twinkle’ to my bump as I was telling him at 24 weeks that the baby could hear and he used to lay on my tummy singing it over and over again! Once again I did all the right things during my pregnancy, ate well, tried to rest, I also attended hypnobirthing classes. I did however, have half a glass of wine at Christmas, looked after my niece one day when she was ill, and had an Indian head massage against advice as my blood pressure could drop.
On Friday 28th May 2010, after a fairly calm hypnobirthing labour and delivery, and only 20 minutes after arriving at the birthing centre, I gave birth to Calum Reece weighing 7lb 5oz. I felt so well I could have done it all again! Calum was very calm, alert, looking around, and breast fed well. He was however, covered with petechiae, the tiny little purpley marks. The midwives told me that it was because he had some burst blood vessels due to him being born so quickly.
The next four weeks were tiring but, when I think back now – they were bliss! I had my two perfect little boys! Ellis absolutely adored his baby brother and would sing ‘Twinkle Twinkle’ anytime he cried and would fetch anything he thought he needed.
Due to giving birth at the birthing centre Calum didn’t have his newborn hearing test at birth. When Calum was two weeks old we went to the Royal Derby hospital. They asked me if he startled and I said no but that he was really a relaxed and chilled out baby. After three goes at trying unsuccessfully to do the tests they told me that we would have to return to see an audiologist and made an appointment for two weeks later.
The day before Calum was a month old he smiled! My husband, Ellis and I were so excited! Two days later our world was turned upside down. When Calum was exactly a month and one day old we went to see the audiologist. My husband and Ellis waited in the waiting room for us. After over an hour of tests I could hear the thoughts in my head getting louder ‘why is this taking so long’, ‘is there something wrong’, ‘maybe he can’t hear us’. Each time my thoughts just kept answering themselves ‘No’ the voice in my head kept shouting, trying to quieten the thoughts.
The audiologist told me he was going to fetch my husband and Ellis. He set up some toys for Ellis to play with, and left the room. While he was fetching them I just kept making up excuses to myself as to why he would fetch them.
When the audiologist had shown Ellis the toys and sat my husband down he told us about the tests that he had been doing. He then told us that the results were showing that Calum had a severe to profound hearing loss in both ears. Words cannot describe how I felt. My precious tiny perfect baby had never heard me! All those songs Ellis sang to him weren’t heard! He continued to explain what it meant. My mind just shut down while I clung onto my tiny precious baby. He asked if we had any questions. I normally have questions about everything. This time I had just one: ‘How likely is it that you’re wrong?’. He said that there was always a first time and rebooked us an appointment for a fortnight’s time when he would perform the tests again.
As my husband had driven in his work van we both had to drive home separately. How I made it home I don’t know. When we arrived home I got out of the car, got Calum out of his car seat, and just sat and clung onto him, silently sobbing. I then decided to see for myself if the audiologist was right. I put on some music, I turned on the television full blast, I slammed doors, I slammed the stairgate so hard I nearly broke it. All the time Calum was still fast asleep, undisturbed in my arms. I knew then that my precious baby couldn’t hear me.
The next few days were horrendous; Ellis kept asking me what was wrong and why Mummy was crying – I didn’t know what to say to him. I knew though, that I didn’t want to tell him while I was upset, that Calum being deaf was so terrible – I wanted Ellis to first learn about it in a positive way. I also kept asking myself what I had done wrong during my pregnancy and what else I could have done to keep my baby safe – was it the glass of wine I had, was the head massage? Was it because I made the wrong decision in agreeing to look after my niece when she was ill? Was it the amount of lucozade I drank to stave off nausea? Why did I not know that my baby was deaf until a health professional told me? Surely I should have realised? The guilt was overwhelming.
I guess the next weeks, months and still probably now, are just passing in what I would describe as shock. The time passes and you get on with things. However, things aren’t the same but the physical hurt inside has lessened. Sometimes I feel almost fine, only for something to trigger in my head and I feel beside myself again.
When Calum was almost 3 months old we saw a paediatrician who checked his weight and development, they also performed blood tests to see if they could tell the reason for his deafness. They discussed the possible causes of his deafness and mentioned genetics and something called CMV. A few weeks later I received a letter that I had been copied into saying that his blood test had come back positive for CMV and they were requesting his Guthrie spot to be sent to their laboratory so this could be tested as well. I was devastated. I had done enough research on CMV to know that this meant he could potentially have other problems as well as his hearing loss, but also I was devastated that I was only getting copied into the letter.
The Guthrie spot also came back positive for CMV. Our teacher of the deaf had spoken with the paediatrician and told her how upset I was at getting the results that Calum had congenital CMV by a letter not even addressed to me. She therefore rang me personally with the results. She also assured me that if there was nothing else obviously wrong with Calum by now, as most babies with CMV are very ill at birth, that all of these other problems wouldn’t happen to our baby. She did point out that the CMV could cause calcification on the brain and that an MRI scan would be needed to show this. I also asked for my pregnancy bloods to be tested, as I felt that I needed to know when I caught the CMV. After many conversations with different health professionals and being told that they would have been thrown away, they found my blood and tested my first pregnancy bloods from when I was 10 weeks pregnant. The results showed that I had CMV, it was my first infection and that I had caught it up to three months prior to having the blood test. I was made to feel a pain for asking for my bloods to be tested by many health professionals trying to put me off pursuing it by telling me that they would have been thrown away. In other parts of the country I understand that it is standard practice to test the Mothers pregnancy bloods when CMV is suspected.
I was extremely worried about Calum and looked up CMV on the internet. It seemed that there was a whole host of other things that could be wrong with my baby that could show up later. These included late onset of eyesight problems, epilepsy, developmental delays due to the calcification, dyspraxia, autism, delayed motor skills, early puberty, behavioural problems, teething problems, issues around food etc etc. It also said that one of the signs and symptoms of CMV is having paetichae at birth. Why were the midwives not aware of this? Why did Calum’s paediatrician tell us that everything else would be ok? The information that I have found are support and information websites set up by parents of CMV children. For someone who has to know everything about everything, especially when it comes to my children, this was not an easy concept to face.
Considering the fact that it causes more birth defects than Downs Syndrome and Fetal Alcohol syndrome how come some health professionals have never heard of it? How come I’d never heard of it? I attended NCT, hynobirthing and government ante-natal classes, read hundreds of baby magazines and spent many hours on baby websites. They all tell you about toximoplasis and even strep B that is extremely rare. I wonder that if I had read a similar story to mine in a baby magazine or on a baby website would I have changed anything? Would I have washed my hands every single time I wiped Ellis’ or one of his friends’ noses? Would I have still shared a spoon with Ellis when encouraging him to eat? Would I still have kissed my toddler on the mouth? Could I have possibly been more careful every time I changed his or my niece’s nappy? Why did I never catch CMV when I was working as a Nursery Nurse in schools and nurseries?
Calum got his hearing aids when he was 10 weeks old. We were obviously expecting to see some responses and it took a few weeks to realise that we weren’t really getting anything from him. We had his hearing aids turned up a few times until he got the most powerful hearing aids turned up to maximum. In November Calum went for another hearing test where they played sounds into his ears and just looked for responses, any tiny flicker of recognition to sound. Up to 115db in his left ear they received no response at all. At 90db in his right ear, at one pitch, his breathing slowed a little bit. It looked like his hearing was getting worse – CMV can cause a progressive hearing loss. They referred us to the cochlear implant team in Nottingham as this looked like the only option of getting our little boy to hear us.
At the moment Calum’s hearing seems to be the only thing that has been affected. His development, in every other way, is hitting every milestone. At just over five months his little hand started to sign milk! Calum is now 11 months old and has around 15 signs and understands at least 50. He is crawling, walking with his walker, is into everything and is a very cheeky, little boy. He is also very vocal and will vocalise to request something along with his signature finger point at anything and everything!
The health professionals that deal with Calum’s hearing loss have been brilliant; if a little slow, at times. However, they are wonderful caring professionals. Calum’s Teacher of The Deaf and his Auditory Verbal Therapist at AVUK in Oxford, have been wonderful in helping us bring out the best in Calum and aiding his achievements.
It is extremely frustrating to deal with some other professionals though. The health visitor had never heard of CMV. Even after visiting us and doing some research she asked how I caught it – she was unaware of the fact that most of us catch it at some time in our lives and it’s only if you catch it when pregnant, or if your immune system is compromised that it causes a problem.
I recently attended a meeting for the CMV support group and found it extremely upsetting that there were parents there of a now 31 year old who faced the same issues with the health professionals and the lack of knowledge and research about it that we are facing. Surely something should have changed in 31 years? Why do baby magazines not give any stories or information about it? Why did none of ante-natal classes that I attended not mention it? Why have health visitors not heard about it, especially as CMV can cause delayed hearing loss and these are the professionals that would be the first port of call from a parent concerned about their childs’ hearing.
We are not sure what the future holds for Calum. We have a meeting with his consultant at the cochlear implant centre on the 4th May to find out if he is a suitable candidate. However, we feel that we are left in limbo a little bit, as we do not know what else, if anything is affected by the CMV. What if he has brain calcification? What is his eyesight is affected? Suppose he gets epilepsy? What if he has learning difficulties? Is the reason why his teeth are late coming through due to CMV? I am aware that occasionally the virus can reactivate and cause more brain calcification. What if my little boy develops wonderfully, then the virus reactivates and causes more calcification, leaving him with physical disabilities or learning difficulties? The questions are endless.
To read more about Calum, visit www.calum-reece.co.uk.
- Shared by his mother, Gaye