January 2009
My wife’s twelve week scan showed two little people waving at us, practically sat side by side!! I blinked thinking my eyes were blurred… and then told the sonographer that there was something wrong with the screen.
We were then congratulated for being expectant parents of identical twins. My initial thoughts, I need more car seats, another room in the house and a bigger car!! The typical practical thinking…!! I think I went white with shock and my wife laughed, cried then laughed again. I was shocked for the next couple of months, apprehensive and excited all at the same time.
The pregnancy itself was classed as a high risk pregnancy, so my wife had a number of scans to check for something called twin to twin transfusion. This thankfully didn’t happen, but we were informed that they would be born prematurely. Prior to the birth of the boys, my wife was given a steroidal injection to assist with the development of the lungs.
Over Christmas of 2008 we were in and out of hospital, blue lighted in an ambulance from one hospital to another because the need of two beds in the special care unit for prem babies.
Alex and Elliot were then born in mid January being 4 weeks premature. They spent about 10 days in the special care baby unit and both were treated for the normal premature symptoms including low blood sugars, difficulty in feeding and were tube fed, jaundice and given phototherapy. They also had petechiae rash over their bodies and sores under the arms and groin and were treated with gentamycin antibiotic. Alex’s newborn hearing screening showed he had no responses to the test and we were told that we would need a follow up investigation with Audiology. A number of tests were carried out at the time, but not for CMV. They also had a further birth defect called Hypospadias which we think may be unrelated to CMV. But nonetheless there were a number of things going on following the birth.
From about 4 months old, we had the support of audiology and teachers of the deaf. This included basic signing support, and initially given hearing aids to see whether this would assist his hearing. However my wife noticed the boys were failing to reach their normal milestones. I initially put it down to them being twins and think a lot of others were trying to reassure us. But then over time it became obvious that things were not right. They rolled side to side, but didn’t crawl until about 18 months old. They never sat or stood. Elliot’s head appeared wonky and his muscle tone around his neck was weak and so his head would drop to one side. Both had low muscle tone in the lower trunks although seemed strong in their upper bodies. The stepping reflex was absent. We then had further tests to establish the cause of Alex’s deafness. We went to a number of audiology appointments to find that he was profoundly deaf on both sides. We were then referred to Bristol Children’s hospital to undertake the cochlear implant programme, which in itself was stressful because we didn’t know whether the funding would be granted from the local primary care trust and we were being assessed as a family to ensure that we followed the programme. Thankfully it was granted and in about April 2010 Alex went for an MRI scan and CT scan. In our ignorance we thought this was just to check whether the cochlear was intact, so that they could carry out the implant operation.
A couple of weeks later, I had worked a nightshift and remembered my wife coming back in tears to explain that something was found on the scan and the consultant wanted to talk to both of us about the results. We then went to speak to the consultant and were told that Alex had congenital CMV. He showed us the scans of Alex’s brain which showed calcifications and cysts. The ventricle in the brain was damaged where the virus had attacked the area causing it to die and showing white matter. CMV initially meant nothing to me, I knew nothing about it at the time, and the consultant explained it to us very well. I think when you have to sit down with a consultant to be told something over about an hour it dawned on me that we were likely to have some issues moving forward. He explained that symptoms could and were likely to increase as they get older. He gave us some NHS websites to look at which explained it very well, but not to worry ourselves from information found on the internet. I think he thought it might scare us. Instincts kick in and I went home and tried to read up on CMV. I like to know what I’m dealing with and think this helped me prepare. Upon this diagnosis, we were given such good support and I can’t knock the health care professionals. Elliot being Alex’s identical twin was then given an MRI scan and was also found to have brain damage but not as extensive. We were hoping that this wouldn’t be the case, but deep down thought it would happen.
Alex has now been fitted with the bilateral cochlear implants and we thought that he would be speaking after about a year. Even at 3 years old this is still not happening. I undertook an intensive BSL level 1 signing course to try and aid his communication. We also noticed that Elliot would babble and talk basically utter nonsense!! It was like a foreign language! He is undergoing some hearing tests and has had some grommets, but will be under constant review by audiology. Both boys are now seeing speech and language therapists, but Alex doesn’t seem to be progressing at the moment.
Both boys have been given Pedro Boots to support their ankles, as they have low tone and hyper flexibility in their joints. Their legs are like dolls legs, quite floppy. They were also given walkers to try and support them as they moved about. As they both got older they are now walking, but it’s like spinning around and round and then trying to walk in a straight line as there balance is not good and they tend to hold onto walls for support. They can’t walk far without getting tired. When they are tired, they are a liability to themselves and so we have to watch them closely because they fall over a lot. We try and take both boys to swimming lessons on a weekly basis to help their strength, this is compounded by Alex being deaf and cochlear implants can’t be used in the water, so he can’t hear. It’s also difficult to sign, as we need to hold on to him in the water.
Feeding has been an issue for the boys. They tend to be sensitive to certain textures of food, and would vomit the food straight up again. Particularly things like yoghurts with fruity bits and they don’t like anything with lumps.
Alex has had some manic sleeping episodes, where he would be wide awake between 1am and 5am. On some occasions he has been kicking and punching out with his eyes wide open and oblivious to me looking at him. This would make him very tired in the morning and being deaf he wouldn’t wake naturally like other kids. We have since spoken to our consultant about this and have been given melatonin which has helped relax him at night time but he still wakes.
We have also gone through some behavioural problems… Alex went through phases of relentless obsessive behaviour. For example, opening and slamming doors. We have been through sets of door slammers, which all get broken, because of the force. We had to resort to towels on the doors, to stop the banging. He is was obsessed with lights and light switches. He even managed to blow a fuse at hospital because he kept turning the light on an off in his room from his cot bed!!! He wouldn’t interact with other children at play groups and stuck to a routine of slamming doors and switching the lights on and off.
Elliot is profoundly deaf in one ear and is severely deaf in his other, which is aided. While he still has some hearing in that ear, it is being monitored regularly. He is like his twin with regards to bowel and bladder issues and mobility.
Both boys have movicol to help bowel movements and are still wearing nappies.
We have the support of a variety of professionals and the boys are monitored very closely.
The boys have support from:
- pediatric consultants,
- audiologists,
- opthalamologists,
- teachers of the deaf,
- Portage,
- speech and language therapists,
- occupational therapists,
- Orthotics
- physiotherapists.
- Bowel and bladder specialists
- Cochlear implant team
The appointments have been hard work especially as we have four children and both work.
On a personal note my wife found it hard to talk about it after diagnosis, as parents we went through moments of blaming ourselves and both felt terrible. Over time we realise it’s not our fault and we just have to deal with things.
We have four children under five, one either side of the twins unaffected by CMV. Our most recent surprise shows us how delayed and different the twins are.
They are loving boys, happy and determined. Between them they have already had 8 general anaesthetics in their early lives.
They have achieved so much more than we expected after the diagnosis. Despite all the issues that the boys overcome they are happy and loved by everyone. They are smilers!!
I am very proud of them. I wouldn’t change them for the world, but would love to lose the CMV… I am also amazed at how little is known about CMV nationally and by writing this would hope that it increases awareness.
Wirtten by their Dad James.