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By December 22, 2021No Comments

September 1993

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 Drs and midwives 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, 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 Dr 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 calcifications, 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 Dr this and he said it could be a possibility, and that the chicken pox virus can cross over and do damage to the foetus.

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 that if she did live 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 herself, 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 Dr 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 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, drinking from a glass of juice with a straw that was on top of the incubator, both his hands inside holding syringes and tubes, saying “ 4ml in, 4ml out; 4 ml in, 4 ml out, over and over again, as he took out her “bad” blood and gave her fresh new 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 Dr 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 breastfed 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 setbacks 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 13, and despite all the odds is doing well. During the years she has been the subject of Dr’s articles, publications and even a “patient” for new Dr’s practical exams as her symptoms were so stereotypical of CMV. 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 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.

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.

She is clumsy, has poor balance, is uncoordinated, is not very strong, cannot ride a bike and is always last in the race or the one who is stuck half way up the climbing frame! But despite this, she has a strong determined character and willingly takes part in anything, 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! We think she doesn’t feel pain or know when she has an infection.

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 is very happy there, has many friends and is learning new things every day.
When she was 11 (at the start of puberty) she started having dizzy spells and blackouts (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 a strange peripheral form of epilepsy. Since starting on Tegretol and taking the correct dosage, this is very nearly under control.
When she started secondary school, 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 are now waiting for an appointment with a psychiatrist, who specialises in working with Deaf children, he has also worked with other CMV children, so we have high hopes with this!

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 an 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 is amazed that she can do half the things she is doing. She also walks with her feet apart and at right angles! We are currently trying to do an hour of exercises a day to help her core stability, but she is not too impressed with this idea and it is not going too well, so we will have to wait and see what happens! Despite the damage that the CMV has done to her, and the difficulties she faces every day, Natalie is a wonderful, bright, happy, clever young lady, who so far has managed to overcome every obstacle that life has been thrown at her. We are so very proud to call her our daughter!