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Diagnosis as a babyOur Stories


By December 23, 2021June 28th, 2022No Comments

July 2012

In November 2011 we found out we were expecting our second child.

We were so happy and excited to be completing our family. I had a dream, trouble free pregnancy just like I had had with my son. I did not have one day of illness. Everything was fine at our 20 weeks scan and our 4D scan at 28 weeks. I enjoyed my pregnancy and we all looked forward to welcoming our new baby.

On Thursday 12th July, I went into labour and on Friday morning my waters went but had meconium in them, the first sign that something wasn’t quite right but the labour went quickly and our little girl was born at 10.42am on 13th July 2012. She was placed in my arms but it was noticed within a few minutes that she had a petechial rash over her body and she had a low birth weight she only weighed 5lb 15oz at 39+5. Blood was taken within an hour of her life that came back with low platelet levels that continued to drop which required her to have a platelet transfusion at two days old. I was on the postnatal ward for 9 days whilst they tried to determine the cause.

She passed her newborn hearing test.

At 6 days old CMV was detected in a urine sample and this was confirmed by a blood test at 11 days old. My husband and I had never heard of congenital CMV and our consultant at Northampton General Hospital did not have a vast knowledge of it although he quickly contacted Oxford Infectious Diseases department for advice. Most of the information we got at that time was from research my husband did and the journal entries he read on the recent studies. Through this, we learnt about the causes and the possible effects and treatment of a congenital CMV diagnosis and to be honest that time was very scary as nothing was definite.

She was given an ophthalmology exam as well that detected no abnormalities with her eyes, so far so good. They ordered my 9 weeks bloods to be retested and it was found that I had a recent primary infection of CMV at that time, so at the worst time very early on in the pregnancy when the worse damage can be caused. We finally left hospital when Scarlett was nine days old but came back when she was 13 days old for an MRI. This detected changes compatible with congenital CMV infection but no calcifications. I remember the phone call we got that evening from Scarlett’s consultant telling us this and my world fell apart as I thought of my beautiful little girl having problems that may not be known until she started to reach developmental milestones.

The next day when Scarlett was 2 weeks old we entered the children’s ward at Northampton General for a 6 weeks course of intravenous Ganciclovir. We were in hospital for 10 days and she had regular blood tests to monitor her neutrophil levels. My little girl was so brave going through those many blood tests, her poor feet and hands took a battering but luckily her long line lasted for the whole 6 weeks and her levels were such that treatment did not have to be stopped. This time was especially hard for our son who did not understand and who I could not spend a lot of time with and that hurt too. So when after 10 days treatment we were allowed to go home on day release but had to return twice a day for her medication and for blood test it was a relief to be able to spend time together as a family. It felt like I spent my whole life at the hospital at this time.

At the end of the 6 weeks, Scarlett was discharged and started a course of oral Valganciclovir which she took until 6 months of age. We could then start our life together as a family although she still had to have regular blood test whilst on the medication. At three months old she had a hearing test which detected a slight hearing loss at high frequencies in the right ear and this has stayed stable ever since. She has regular 6 monthly hearing and eye tests and regular appointments with her two consultants.

During her first year of life, I looked out for her developmental milestones. She never really rolled and did not sit unaided until 8.5 months. Although she seemed delayed in her gross motor skills and, fine motor skills, she seemed well developed and she loved playing with toys and picking small objects off the floor. She finally crawled at 16 months old and you never saw a happier little girl be able to move on her own, she was so proud of herself.

Scarlett is now 21 months old and still cannot walk unaided although she can pull herself up and walk along the furniture and she also loves walking with us and can do it holding one hand. Even though Scarlett’s diagnosis and the uncertainties of what the effects will be for her are very draining at times, I would not change my little girl for the world. She is a chatterbox and has over 90 words and is putting two or three together. She is such a cheerful and affectionate little girl who loves playing with her brother and enjoys nursery and loves singing.

Scarlett recently had a balance assessment at University College London Hospital as she is still not walking. Apparently, she has bad balance that is caused by problems in the inner ear not telling the brain about what is around them. This will mean she will still walk eventually as you need two of the three things of touch, sight and inner ear function to balance and walk. She will just be very delayed with it and clumsy and prone to falling when she does walk. There is no treatment as such, just encouragement and practice and help from physios and occupational therapists for exercises to help. We have to go back in a year as they couldn’t say if she has total balance loss from inner ears as Scarlett wasn’t co-operating with tests. If she has total inner ear balance loss, then that can be dangerous when swimming underwater as if she cannot touch the bottom and cannot see the top, she won’t know what direction to go in and she can drown.

We have a few years ahead of regular hospital appointments and uncertainty about her cognitive ability but we have a healthy and happy little girl who is a joy to us all. I hope that through our story that the profile of this little known but common condition can come to the fore in the medical profession and that more support becomes available to expectant families about the risks and preventative measures.

I hope that in the future there will be a vaccine against CMV for teenage girls so that this condition that can bring debilitating effects can be eradicated for good.

Here is an update to Scarlett’s story:

Scarlett is now 4 and a half and started mainstream school in September. She is thriving at school and loves it and is coming along really well in reading and writing. She has found making new friends easy and has some good friends.

In the last 2 and a half years, Scarlett has come a long way, she started to walk at 2 years old. At 3 her diagnosis of vestibular hyperfunction was confirmed, so even now she can struggle with her balance in PE although the way she can right herself if she overbalances is amazing and she was discharged from the physiotherapist just after she started school. Also at 3 she was fitted for hearing aids in both ears and her hearing in both ears has been slowly deteriorating ever since, she now has a moderate loss in the left ear and severe loss in the right ear at high frequencies. She took to wearing the aids really well as I think she appreciated that she could hear more with them, they also helped her speech and she was discharged from the speech therapist at 3 and a half. Her appointments have decreased a staggering amount and now she only has 3-6 monthly hearing tests and yearly eye tests.

Scarlett is a very determined and feisty little girl and her attitude is growing (poor Mummy and Daddy) This has helped her to be the fighter she is and I can only see future success for our girl.