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Emma and William's Story
"A mother's perspective..."
When my husband, Hugh, and I were told that we were expecting twins at our 7 week ultrasound we were nervous and worried about how we were going to manage but we were also very excited and looked forward to completing our family and welcoming two wonderful new miracles into our lives.
My pregnancy was hard work as most of them are. I was pregnant with twins, I had morning sickness in the first trimester, extreme fatigue in all three, I had 2 small children to look after (Ellen 4 and Grace 2) and we moved house when I was 4 months pregnant. This became even more difficult however when for the 3rd pregnancy in 5 years I started getting Vasospasm in my breasts. It was as painful as it sounds. I was extremely grateful if I had 3 hours reprieve in between what would at times be 20 minutes of excruciating episodes of pain which I would get 24 hours a day for the latter 6 months of the pregnancy.
It would be an understatement to say that by 37 weeks I was very much looking forward to meeting the twins. They had been growing extremely well and were both exactly on the middle range of normal for a singleton pregnancy. I wasn’t surprised as I felt every bit of them. With both babies in a breech position I was scheduled for a caesarean section on the 4th November 2010.
I will never forget holding them for the first time while oblivious to the fact that I was still being sewn up. A boy and a girl in each arm, it was a magnificently happy moment of pure joy. I was now an extremely proud mother to four beautiful children and I could hardly believe it. At 37 weeks and 2 days I gave birth to Emmaline Rose Daly, 3.37kg, and William Lyndon Daly, 2.7kg. They were both put on oxygen for a short time and put in the special care nursery but were well enough to room in with their very anaemic mother after I started recovering from a fun episode of paralytic ileus (intestinal blockage after surgery) and when they were 6 days old we all came home together.
While we were still in the hospital Emma and William underwent a routine hearing test (SWISH) and to our surprise Emma’s right ear and both William’s left and right ears failed. As I was aware that babies can often have some residual fluid to get rid of after ceasarian sections I wasn’t concerned. We went home to start working out how we were going to manage four children under 4 1/2 years and organised to get the twins retested in a few days hoping it would be enough time for the fluid to clear. It wasn’t – they both failed the test again! So we were referred to the audiologists at Randwick children’s hospital for an ABR (auditory brainstem response) hearing test a couple of weeks later. Emma was first and as we had expected she only had a mild conductive loss in her right ear most likely due to fluid. Then it was William’s turn and an hour and a half later we sat down to be given his results. I felt tears working their way down my face as I listened in disbelief. William had bilateral sensor neural hearing loss, moderate in his right ear, moderate to severe in his left. It was permanent and couldn’t be fixed. William would need hearing aids for the rest of his life. We were then told we had choices to make and other tests we could do to try and find the cause of William’s hearing impairment. We were also referred to Australian Hearing, a wonderful support for the hearing impaired or deaf, where William will be able to get his aids and be carefully monitored until the age of 25.
At 3 1/2 weeks William had his urine tested for CMV, Cytomegalovirus. When the test came back positive I did a quick Google search for congenital CMV (congenital meaning present at birth) and was terrified by the possible outcomes – deafness, blindness, seizures, cerebral palsy, mental retardation, global development delay, central processing issues, behaviour disorders and the list went on. It was then that we decided to have Emma’s urine tested for CMV as well and as we expected it also came back positive. Although I will never know for sure I believe I caught it at about 29 weeks as I remember having a sore throat and some night sweats at the time which I had simply put down to more pregnancy discomforts. I also spent a scary night in hospital concerned that I was going into preterm labour after waking at home in the middle of the night with heart palpitations, a splitting headache and an irritable cervix. I went home the next day thinking all was fine. It is possible, even common, however for someone to have CMV and be completely symptomless.
I was absolutely stunned to find out that my twins had caught a virus from me while I was pregnant which I had never heard of before and the more I learnt about it the more dismayed I felt. In context with my own experience I was a little anxious with each of my three pregnancies for a number of reasons: I had been managing depression for years, I was adopted and my husband and I required the assistance of IVF to have a family. I had gone through 2 IVF stimulations, 10 blastocysts, 6 transfers, a blighted ovum and a miscarriage at 12 weeks so I found myself to be quite diligent in trying to make sure that I gave my babies the best start in life. For each of my pregnancies I didn’t drink alcohol, eat soft cheese, shell fish or processed meat. I kept well away from smoke, fumes and chemicals as much as possible when you’re living in a city and I tried to eat healthy, taking a pregnancy vitamin supplement every day which included folic acid. As far as I was aware I had it all covered but little did I know.
I soon learnt that I most likely caught CMV for the first time while pregnant with the twins. There is only a 1% chance of the virus crossing your placenta if you have had it before but a 40% chance of it crossing your placenta if you haven’t. I learnt that it is a very common virus, harmless to most of us unless, like a growing fetus, you have a vulnerable immune system. I learnt that there is strong evidence to suggest that there is a link between cCMV and many still births and it has been proven to be the most common cause of disability in newborns. I also found out that there is no vaccine as yet and it is not routine, or protocol, for Doctors to inform, advise or screen their patients for CMV. I am unable to describe my deep sense of disappointment at not having been given the rite to choice, the opportunity to try and protect my babies through simply minimizing my exposure by being a little more diligent with hygiene (particularly in regards to my children). I am absolutely convinced that I would have washed my hands a bit more often, not shared cups and utensils and given my kids extra cuddles, kissing them on the head instead of on the lips. I know it will not always be possible to avoid it but surely if we minimize our exposure to it some might be lucky enough to avoid contracting this awful virus. Isn’t this how we’ve reduced SIDS fatalities, through learning safer sleeping practises for our infants? When I let my kids drink out of my cup or kiss me on the lips all I thought I was risking was a cold, some additional inconvenience to myself. If I had realised I was risking so much more than just a cold I know I would have happily made some minor adjustments. Wouldn’t you?
A week before Christmas 2010, when William was still only 6 weeks old, he was sporting his first pair of funky purple hearing aids. You would not believe how many times purple hearing aids can actually be misplaced or lossed in one year!! We have had to search for them in all sorts of places; under lounges and cushions, in Will’s cot or our bed, in the car and under the car and even in the lego box. Their durability has certainly been tested as well having fallen in to William’s vomit, caused by reflux, many many times and having Emma pulling and tugging at them much to William’s dismay only to try and put them into her mouth!
By Christmas my husband, Hugh, and I had decided to enlist the help of the Shepherd Centre for William’s early intervention with the aim of him growing up with the same opportunities as any hearing child, to reach his full potential within the hearing world that we live. The sooner we could start the better. I needed to do something proactive to help William. I wanted and needed to be well informed and since there was a waiting list due to a lack of state funding and it was coming up to Christmas I was kindly offered the opportunity to attend an intensive workshop run over a week in January for those who live long distances from the city. For a week I travelled to and from the workshop with my four children. I met some wonderful and inspiring people with fabulous success stories. The staff from the Shepherd centre could not have been more obliging and supportive. They also ran a program for the kids where they felt they were at a holiday program especially for them. By the end of the week I had learnt an enormous amount and found a great support network of professionals.
Meanwhile, William and Emmaline’s newborn PCR (Guthrie heal prick test) was tested to confirm whether they had congenital CMV or coincidently picked it up after being born. When their PCR tests came back negative we were delighted however we were also informed that there was a one in five chance of the result being incorrect. Finally, William had a CT scan to check his cochlear, the physical bone structure which gives us sound, and to confirm that there were no calcifications on his brain. A week later I returned with William to see the Infectious Diseases Specialist for the results. William’s CT scan surprised us all by revealing some calcifications on his brain, the remnants of a past infection. This was irrefutable proof that William had congenital CMV. We were told that with there being so many unknowns, however, all we could do was manage his hearing and feel reassured at least that no other issues were evident at that stage. We were also made aware though that William had a very real risk of his hearing deteriorating over time, having developmental delays and seizures among other possibilities. I cried all the way home.
After 7 months of frustratingly flat tympanometry tests (indicating a conductive loss most likely due to glue ear) and often questionable Audio Verbal Therapy responses such as a tiny eyebrow rise which were almost painful to witness Will finally had grommets put in both ears at the beginning of August. Afterwards, however his responses didn’t improve as we had hoped they would. Since then he has had one VROA test (Visual Reinforcement Orientation Audiometry), or “puppet” test, which was deemed unreliable and 5 cortical auditory evoked potentials (CAEP). In the last test carried out he wasn’t able to detect the sounds ‘t’, ‘g’ and ‘m’ at 75 decibels with his hearing aids set to a hearing loss between 90 and 120 decibels. So, basically, if a jet plane was 20 metres away William would probably be lucky if he heard it at all. To put it simply, I was devastated. I thought I was prepared for this result since I was almost expecting it and so was surprised and confused with my own reaction but as my GP said to me you can put the armour on to help protect yourself but it doesn’t stop the force of the blow. That week I became an emotional mess feeling quite disconnected from friends and family in my life that were going about living their normal lives. I felt so alone and the only people that understood were other Mums who have gone through or are going through something similar.
We now have a repeat ABR test booked in and are waiting on a date for an MRI scan to ensure Will’s auditory, or vestibulocochlear, nerve is intact. Once this is done we are hoping for him to be approved to receive bilateral cochlear implants just in time for them to be switched on so that he can receive his gift of sound this year for Christmas. William and Emmaline are now 11 months old and although we don’t have all the answers as yet since they will take time to unfold as we watch them grow they are doing beautifully in their own ways. Apart from being a little delayed and having to deal with fairly bad excema Emma is thankfully meeting most of her milestones. She isn’t crawling as yet but gets herself around the place pretty well with a lot of rolling so it shouldn’t be long before she does crawl. William has continued to progress which although slow is reassuring. He’s sitting up straighter and has better strength and control of his neck. He rolls although I’m sure he avoids rolling all the way because he still hates being on his tummy! He isn’t crawling yet but he will in his own time. They both love their food and lots of cuddles and all in all they are very bonnie babies as a good friend of mine tells me. They are incredibly charming, joyful and cute and bring everyone they come across so much love.
Through all of this I believe they have helped strengthened the relationship between my husband and myself and brought us closer together. Hugh has remained strong having to deal with huge additional outside pressures as well and he has been my rock throughout all of this. I am so grateful for the constant love and support he has provided his family. Hugh I will always admire, love and respect you for as long as I live. To my big girls, Ellen (now 5) and Grace (now 3) how wonderful, bright and caring you both are. You have been so patient at times and I thank you too for how lucky I have been. It is funny how we can learn and grow when we least expect to. He can’t hear (yet), he can’t speak (yet) and he can’t walk or even crawl (yet) but he has taught me so much already. Congenital CMV may have robbed William of his hearing, it may have made it harder for him to reach his milestones and it may take him longer to get there but it hasn’t touched his amazingly beautiful spirit for it is as perfect as it can be.
- Shared by their mother, Kate