Back to Stories
Natalie's Story
"Everything had been going fine with my pregnancy until the 18-week scan..."
Then I was told I had my dates wrong and they put me back by 5 weeks, originally it was August 15th, now it was September 29th. I was a bit upset about this, as we had been trying for a baby and I was positive about my dates. Still, at least it gave us a bit more time to get everything we need and to prepare the nursery. We now think that she was already ill when I had the scan and therefore small making her appear “younger”.
With hindsight perhaps I should have realised something was wrong, but this was my first baby and I didn’t know otherwise. Basically my pregnancy appeared to be trouble free, I had morning sickness up to about 14 weeks, but after that everything seemed fine. All my check ups with the doctors and midwifes went well. I was told, “everything was going along as it should be, that the baby was growing well, that it seemed a large, healthy baby with a good strong heartbeat and as I was only small I may need a Caesarean.” I did go to hospital at about seven months, because I couldn’t feel the baby kicking, I was monitored for a few hours, everything seemed OK, so we went home. Now, thinking back I realise how ill I felt throughout the whole pregnancy, I never “bloomed”, I was exhausted all of the time, even though I wasn’t working. I had no appetite and put on very little weight, my “bump” was tiny and I never even had the chance to wear my new maternity clothes! The baby never really moved about a lot or kicked with any force, more like occasional gentle bumps. I thought this was all part and parcel of being pregnant and didn’t think much about it until after the baby was born, when I realised I had not had anything like a “normal pregnancy”. I can’t complain about of the medical care I received; this was 13 years ago and pregnant women didn’t have as many scans and tests as they do now, and because I never complained about anything, they couldn’t foresee that there was a problem.
On the 19th August 1993 (to my dates, not to the scan dates) at 4.50 in the afternoon, after a VERY short, natural, pain relief free, labour Natalie Rose was born. She actually scored a 9 on the Agpar test at birth and was wide-awake with beautiful big brown eyes and a mop of black spiky hair! She weighed 4lbs 10oz. They gave her to Steve to hold and we noticed she was covered in hundreds of purply/pink spots – petechiae. Whilst they were cleaning her up Steve went to phone our parents to say she had arrived – a bit spotty and small – but fine - famous last words!
We were then told they were going to take her to the Special Care Baby Unit (SCBU) for some tests to find out why she had the spots. It is around this point that things began to go downhill.
I had a shower and then we were taken to see her, we were warned that she was poorly and that there were lots of wires and tubes and that it was very noisy, but at the moment they didn’t quite know what was wrong.
Even though they told us what to expect, nothing could have prepared us. There was this tiny bright yellow baby, totally covered in bruises, with wires and tubes coming out from what seemed like every part of her body, What was also obvious was how huge her tummy was. There was one positive sign, she could actually breathe for herself, she did need oxygen in the incubator, but thankfully didn’t need tubing.
There was very little that we could do, there were that many people in that tiny little room, we decided to let our parents know what was happening. When we came back a doctor took us into a small family room to tell us what he knew.
They still didn’t know what the problem was, but they could tell us the symptoms. At this point they knew that she was small, had acute jaundice, acute petechiae, hepatosplenomegaly (enlarged liver and spleen), thrombocytopenia (low count of platelets in the blood), her blood wouldn’t clot and she kept bleeding. She also had a bleed on her brain and hydrocephalus (water on the brain). He said they thought it was a virus of some sort. At this point I remembered I might have had a very mild dose of chicken pox when I was about 20 weeks pregnant, I had come into contact with a child with chicken pox and had 3 or 4 strange spots come up on my leg, I went to the Drs who said it might be chicken pox. I told the doctor this and he said it could be a possibility, and that the chicken pox virus can cross over and do damage to the fetus.
He also told us that she was very poorly. They thought she would live about three hours. They asked if we wanted to see a vicar and get her christened. We talked about treatment and we were told there was very little they could do to help her, there were no medicines that would help, they also said she would probably be blind, deaf, brain damaged and would have little quality of life. After much discussion and deep thought we decided that, as she was so ill, and her future looked so bleak, it would be better just to let her go. We didn’t want them to operate or do anything more to hurt her, we asked the Drs to do everything that they could for her to help her fight and survive for her self, but nothing more.
Then we phoned our families – Natalie’s nanna, granddad, grandma, aunt and uncle, and told them the terrible news that if they wanted to see this precious little baby, they would need to come fast.
Our families came to visit her; it was around midnight when they left. I was exhausted, and as there was nothing we could do for Natalie, not even hold her, I went to bed and Steve went home. The hospital had offered us a side room with a double bed and said Steve could stay as well as me, but, we never expected things to turn out this way, our dog was at home alone, would want feeding and letting out, and we were expecting a new cooker to be delivered first thing the following morning!
I went to bed feeling dreadful, I couldn’t sleep, all I could do was lie there looking at the photo of Natalie that a nurse had given me and telling myself, “they only gave her three hours, now she’s lived for more than seven hours, so maybe there is hope after all”. I must have eventually gone to sleep, because the next thing I remember is a doctor knocking on my door at about 2 o’ clock in the morning. He told me that the jaundice was getting worse and that acute jaundice (Billie Rubins) can lead to brain damage and all sorts of other problems. He said they wanted to give her a full blood transfusion, to try and get rid of some of the jaundice and give her a fighting chance. He also told me that the transfusion wouldn’t save her life, but if she did live it would mean that the damage to her body and brain would be less than if we let her fight the jaundice on her own. I asked if I could phone Steve, but was told there wasn’t time, I needed to sign the consent forms there and then, as they needed to order and get the blood delivered from Sheffield. I decided that despite our earlier decision of no major interventions, that strictly speaking a blood transfusion didn’t come under this category, it wouldn’t save her life, but if she did live it would give her a better chance in the future as it may stop some of the permanent damage being done to her body and brain. I signed the forms and the Dr went away to start the procedure.
I phoned Steve to let him know what was happening, he had already arranged for my mum to go to our house the next morning for the cooker delivery, the dog had been sorted out, so he said he was coming back to the hospital to stay. I told the nurses this and I was moved from a single room, to a double one – it even had a television and tea making facilities, so we didn’t have to go onto the ward and see the other mum’s with their new babies, unless we wanted to. When Steve arrived, we went back down to see her, she was still holding her own, the blood hadn’t arrived yet, we felt hopeless and in the way, so we went back to our room.
What followed was the worst night of our lives; we both eventually fell into a fitful sleep, waking every time we heard the phone, or the call bells ringing, thinking it was the baby unit phoning to say she’d passed away. We got up around 7.30 and asked the nurses if they’d heard anything, they hadn’t. We went straight down to the unit; we will never forget the sight that met us as we went into Natalie’s room. She was in an incubator, on one side was a nurse, and on the other was the Dr who had first spoken to us early the previous evening, the one who had asked me to sign the forms very early that morning and he was still here. He looked exhausted as he stood there, with a glass of juice with a straw on top of the incubator, both his hands inside holding syringes and tubes, saying “ 4ml in, 4mil out; 4 mil in, 4 mil out, over and over again, as he took out her “bad” blood and gave her new fresh blood. We didn’t stay, as we knew it was going to be a long process and we didn’t want to get in the way.
Some time later, a different doctor came to see us; he was a senior paediatrician who had just moved that day from Nottingham – what a day to start a new job! He told us that the transfusion was finished and had gone well, that she’d tolerated the whole procedure remarkably well and that she was a strong little fighter! He said that she was now under double phototherapy lights, which were also to help alleviate the jaundice, and would be wearing little goggles to protect her eyes.
This was now day two, we were told that I had not had chicken pox, but I had had another similar (and related) illness – Cytomegalovirus or CMV and that it had crossed over to the baby. We were also told it was very rare, very little was known about it and that the prognosis for her future was very poor.
To cut a long story short, Natalie survived, going from drip feeds, to nose tube feeds, then finally at two weeks old I breast fed her for the first time, unfortunately I had to stop this after a few weeks, as she wasn’t getting enough and needed more than I could give her, then we went to Bottle milk with added calories. (She had a dairy and gluten free diet until she was two.)
Her eyes were tested, they were OK, there were a few set backs along the way, and she needed a few more top ups of plasma, but she eventually came home when she was 10 weeks old. Even then we had no guarantee on how long she would live. We found out at 4 months that she was profoundly Deaf; something we had thought was a possibility. Ironically I had always worked with Deaf or special needs children and could already sign, and lots of our family went to signing classes to learn.
Her development was slow; she didn’t sit until 15 months, didn’t really crawl properly, and walked at 3. She had physio and hydrotherapy and wore special Piedro boots until she was five.
Natalie is now nearly 18. During the years she has been the subject of doctor’s articles, publications and even as a “patient” for new doctor’s practical exams as her symptoms were so stereotypical of CMV. She has spoken at CMV and CI events talking about her life and how CMV affects her. It took over a year for the jaundice to finally go, over 5 five years for her liver and spleen to be noticeably smaller and she was nearly 10 before they became “hardly noticeable”. Even now we know if she is going to be ill, as they swell up – a kind of an early warning system! Her liver function, height and weight are now all on the “very low side of normal tolerances!”
At three she received a cochlear implant that opened up a whole new world of sound to her. She was then fluent in sign and since she has received her implant she now has two languages both BSL and spoken English. She has gained tremendous benefit from her implant and loves music and singing. She can communicate equally with both with Deaf or hearing people. She shows tremendous skill with language and soaks up and then uses new words all the time. In 2010 she asked to have her other ear implanted. The operation went well and we looked forward to switch on with anticipation mixed with some trepidation. As expected all she could hear at first were beeps, we hoped that with practise that these would turn into sounds and then words. Natalie persevered with the new implant for three months, using it all and every day and doing listening practise. The beeping never stopped, even when it was turned down to lowest setting the beeping overshadowed everything she could hear with her first implant, and was most upsetting and stressful. The reasons for this will become clear later on in her story!
At seven she started wearing glasses. She wore these continually until she was 11; when the problem seemed to resolve itself and she only wore them when she needed too. By May 2006, her vision had become extremely short sighted, particularly her left eye and she now wears glasses all the time. By 2009 she had developed a squint and prisms were added to her glasses. In her words (2011) “she is as blind as a bat without them, but sees perfectly with them.”
She is clumsy, has poor balance, is uncoordinated, is not very strong, and is always last in the race, or the one that is stuck half way up the climbing frame! But despite this, she has a strong determined character and willingly takes part in anything; she finally mastered riding a bike (slowly and very wobbly) in 2008 which was a huge achievement for her! She struggles with fine motor skills such as laces and buttons, but we have overcome a lot these problems – thank goodness for Velcro! She does have some learning difficulties and has been diagnosed with Dyscalculia; her behaviour can be very challenging. She also has eating and sleeping problems and suffers from asthma, eczema, psoriasis, cold sores, hay fever and numerous allergies – she has extremely sensitive skin (requiring hospitalisation at times). Also she doesn’t have a lot of her second teeth – they are just not there! She does not feel pain or know when she is ill.
Until the start of year 6 Natalie went to a mainstream school with a fully integrated unit for Deaf children, this gave her a wonderful start to her education and she did well there, coming in the top 5 of the class in Literacy even in a class of 25 hearing children (5 Deaf). In year 5, it became obvious that Natalie needed more support than was available, we also felt that she wouldn’t cope in the mainstream secondary school, as it was so large - she was already beginning to struggle in the much smaller primary, so we decided it was time for a change. We visited a few schools and at the start of Year 6 she started at a local Independent Deaf school, where there are small classes and more classroom support. Natalie was very happy there, she made a few friends although she does struggle with relationships, and did very well.
When she was 11 (at the start of puberty) she started having dizzy spells and black outs (she has always had “blank” periods when we say she’s gone to “La La Land”!) After an EEG, which showed odd random spikes all over the place, she was diagnosed with partial complex seizure disorder. Since starting on Tegretol and taking the correct dosage this remained under control for a few years and in 2009 she was weaned off it. She had no seizures for a while, but we noticed that her bad behaviour had increased. During her secondary school years, she stayed at the Deaf school for most of her lessons, but went to the Mainstream Unit for English and French lessons, she did very well academically, but in Year 8 we withdrew her from the mainstream for a variety of reasons, including her increased bad behaviour there and her motor difficulties.
Following an increase in both the frequency and severity of her bad behaviour which includes violence to others, we saw a psychiatrist, who specialises in working with Deaf children; he had also worked with other CMV children, so we had high hopes for this! Unfortunately things did not work out as planned and her behaviour remained very erratic.
We have always had our concerns over Natalie’s fine motor skills; she was assessed by an OT in 2003, who said she could do everything, but just needed more time than other children. As she got older it became more obvious just how much she couldn’t do compared to “normal” children her own age, and we felt it couldn’t all be put down to the developmental delay she had had. In January 2006 we saw another OT, who referred her to a physiotherapist. After assessment, mild Cerebral Palsy was mentioned although not as a formal diagnosis, she has low tone in legs, arms, abdomen and high tone in neck, chest and back. Although she can walk and do a lot of things, she is not doing them properly and is locking herself into position all the time; the physio was amazed that she can do half the things she is doing. She also walks with her feet apart and at right angles! She was supposed to do an hour of exercise every day to help her muscles, but she didn’t like doing them and it cause major behaviour episodes, so we stopped. She is still clumsy, her muscles are all over the place, she complains of joint ache – we wait and see if she has worn out her joints by locking them all the time to keep balance.
In 2008 we were again worried about her behaviour particularly as she was showing a lot of autistic tendencies. She was assessed by a local paediatrician and referred to the local mental health team for further assessment for Asberger Syndrome. The psychologists said that she did not have Asberger Syndrome as she gave eye contact and understood empathy and that we must encourage her to be more mature and independent. These were the same psychologists who we had seen on at least four previous occasions through the years and who had never seen or understood the problems we had – telling us, “it’s her age”, “all deaf children are naughty, “it’s your fault – don’t argue with her” – that’s easy to say when you are not the one trying to give medicines or get your child to wear clothes to school on a cold December morning!
Despite all her problems, Natalie did extremely well in her school exams – gaining 13 GCSE’s at grades A-C, we were so proud of her. Following her GCSE’s she stayed in the Post 16 department at the Deaf School and via that and with support from them commenced at a local college doing a level 3 child care course. She started really well, enjoying the course, getting good grades for assignments etc, but after a few months her behaviour became very difficult once more. It culminated with her being physically violent because she didn’t like college any more. So, once more (in 2010) we were referred to a CAMHS Team who specialise in Deaf children.
This time we had more success. It was agreed immediately to put her back on tegretol as it can help with behaviour issues. The Summer of 2010 was lovely, Natti was on long term sick leave from college, there were no demands made of her – she lived her life just the way she wanted to! In September 2010 she started at a different college to do “A” levels – again with the support from her Deaf school. Again things started off well, but once again very soon things started to fall apart and the bad behaviour resurfaced. This included running away from school and threatening me with knives. Again she was put on long term sick leave and the tegretol dose was increased. It seemed that as long as everyone was following her agenda life was fine, if not, things could get very nasty for all involved.
Following many assessment sessions and lots of question and answer sessions for us, Natalie was diagnosed with Asberger Syndrome in January 2011. We now know why, she likes routine, why she flaps, why things are too noisy, too bright, don’t feel right. Why she struggles in new places or with new people, why life overwhelms her at times and why she has these melt downs! It also explains the lack of success with the second implant. She doesn’t like giving eye contact but she does because she has to due to being Deaf. She knows about emotions and can accurately describe them, but this doesn’t mean she understands. We also now know she doesn’t understand facial expressions and body language. It is very early days yet, and Natalie is struggling with a lot of things including this new diagnosis. She is seeing two different mental health teams and we are going to family therapy, she goes to a youth group for teenagers with mental health issues and will soon be starting a “how to cope with….” course with other girls of a similar age. There are some small improvements, but we take every day as it comes. She recently started self harming and has taken an overdose. As the team leader said when he first diagnosed ASD, that Natalie is very clever; she has learned to copy other people and to appear the same as them. She has actually lived an act for many years and it will be very difficult to break this. Natalie also really struggles to talk about how she feels which doesn’t help matters. We see the risky behaviour as “every cloud has a silver lining” and now the professionals seem to finally understand that the happy smiley Natalie they see, is not the real Natalie. She is currently doing some voluntary work at her school in the primary department and with children with special needs in addition to deafness. Hopefully in September she will be starting a City and Guilds apprenticeship at the Deaf School and will gain a qualification as Teaching Assistant. We wait and see what happens with this as we still need to preserve ours and Natalie’s sanity!
Around Christmas time 2010 Natalie had a grand mal seizure and has had many of her dizzy spell seizures this year. She has also had frequent infections and her eczema is chronic – she rips her skin off and it is regularly infected. We are hoping this is all related to the mental stress and when we get to the bottom of this then everything will improve.
Despite the damage that the CMV has done to her, and the difficulties she faces every day, Natalie is a wonderful, bright, clever young lady, she is a fantastic actress and sign singer who has so far managed to overcome in her own way every obstacle that life has thrown at her. Now we have the right support, we hope this continues to be the case and that the future will look bright for her once again.
We are so very proud to call her our daughter!
- Shared by her mother, Carmen