A Mother Never Forgets

Caragh Lauren Reid 

The first moments of Caragh's life I will never forget.  Seconds after she was born, I looked down and saw a shock of black hair as she was handed to me,wide awake looking up into my eyes. Of course she was the most beautiful baby girl I had ever set eyes on, however, I immediately noticed something different about her.  She was blue from head to toe.  Nothing like when my boys were born with little blue hands and feet that turned pink within a couple of minutes.

As the doctors worked on me I said to them, "she is still blue."  They said give her time, she will pink up.  Another minute or two went by and I said a little more insistently - "she is still blue, is this okay?" The midwife and doctors kept reassuring me that all was well.  The whole time Caragh was looking at me with a really intent stare but still her colour was not changing.  Beginning to feel panic I then yelled, "she is STILL BLUE." The doctors looked up and seeing that she was not pinking up as quickly as they had hoped, blew pure oxygen into her face.  Instantly she turned pink.

Panic over. Time to establish Respiration 5 minutes.

The rest of our hospital stay was uneventful with Caragh doing well feeding and sleeping - albeit her body clock liked to sleep all day and be wakeful during the night.

At 6 weeks old when I went to pick my baby up from her bassinet for a feed, I got the fright of my life because her eyes were bobbing about in the back of her head. I had already noticed that she didn't have good control of her eyes, but put that down to the normal way babies are as they learn to focus. However, again this was different.  I called the doctor immediately, took her for a check up and was told all was okay, nothing untoward going on, no seizures, no temperature and the doc concluded it was just poor eye muscle control.

The next little surprise Caragh had in store for us was when she was 10 -12 weeks old.  Her 'soft spot' or Fontanelle closed over completely.  Now for any of you who know about babies, that soft spot is a very important indicator of baby's health and should not close over totally until the child is at least a year old.  This meant another trip to the doctors with a referral to a paediatrician who thoroughly checked Caragh out.  She was developmentally doing well, again with nothing untoward going on.  They put the closure of her Fontanelle down to 'possibly a familial trait.'

As the weeks changed to months I had a constant feeling of unease about my baby girl.  She was doing things very differently from my three previous babies.  When I held her up taking her out of the bath, her little body would be so 'tight'.  Her head arching back and her toes curling up. If I tried to gently move her head forward to put some clothes on, she had such a tight neck she couldn't easily allow her chin to her chest.  Her sounds were different.  She had a very guttural raspy quality to her baby noises. She was always very engaged with her eyes, looking at you intently, smiling and following you around a room, but if you put a rattle in her hand it was as if she did not know she had arms and hands.  Her movements were jerky.  I would be on the verge of taking her to the doctors because she was not reaching her milestones and then she would achieve the milestone, making me think I was worrying about nothing.

Sleeping Angel at 10 months old

The first Christmas after Caragh was born my parents came to visit us in Australia.  She was 10 months old.  After a few days, Mum and Dad eventually asked me "Karen do you think there is something wrong with Caragh?"  Of course my answer was yes. That was the start of many doctors visits and investigations; Paediatricians, Physiotherapists, OT and Early Intervention therapies were all carried out.  Frustratingly, the doctors could not find anything wrong with her but did realise that she was slightly developmentally delayed, so decided to keep an eye on her.

Caragh sat at 12 months, crawled at 14 months and walked at 16/17 months old.  Delayed, but not too delayed.  All was progressing as smoothly as could be expected until she was 18 months old when I put her down to walk and her right leg flicked up behind her.  At first I thought I had imagined it, however, over the next couple of days this leg 'tick' got worse, then her torso became involved - twisting involuntarily, then her facial muscles joined in the onslaught of uncontrollable movements.

Immediately the Early Intervention physiotherapist arranged for Caragh to see a Paediatric Neurologist as she felt that Caragh was no longer "symmetrical"- meaning that one side of her body was no longer in sync with the other side of her body.  In fact at times it looked as though Caragh had had a stroke.

However, she was happy, well in herself and a delightful natured little thing.  That demeanour is what kept her out of hospital.  Once the Paediatric Neurologist saw her he arranged for her to have a CT Scan after the weekend of our appointment.  He did warn us that if anything at all changed or got worse in the meantime to contact him immediately.

Perfection

Over that weekend things got dramatically worse.  Caragh could no longer walk, her legs kept tripping her up, her torso was twisting and one side of her face was pulling.  When we called the Neurologist, he sounded very concerned and told us to make our way immediately to The Sick Kids in Melbourne. He called ahead to tell them we were on our way.  We had to farm out three little boys and drive the 6 - 8 hour drive to Melbourne.  That trip was done in silence.  All I kept hearing was the Neurologist saying, there has to be some kind of pathology going on there.  i.e. he thought she had a brain tumour.

We arrived at the Sick Kids at 9 p.m. that night where Caragh was promptly admitted to the Neurological Ward and the next day the barrage of tests began.  Lumbar Puncture, Brain Scans, Blood Tests, Physical Examinations.  She became known as 'the little girl with the gait' because of how strange her walk had become.

As she was such a puzzle, she was also quite an attraction and we were asked by the Consultant Neurologist at the time if we minded Caragh being the subject of a meeting of Neurologists and would we be happy to be interviewed/asked questions by a room full of doctors.   Of course we said we would be happy to help as they were all trying to work out what was going on.  All the while Caragh was still smiling and happy!!

After a week in hospital they thought Caragh had the rare Neurological Disorder called Segawa's Syndrome.  However people with Segawa's Syndrome do not have intellectual delay or disability.  Her physical symptoms of the uncontrollable Dystonia were the deciding factor of this diagnosis and so they started her on a drug regime that had never been tried on such a young child.  In fact she was the only child in Australia on the drug L-Dopa at that time.  We had to increase Caragh's dosage daily until the Dystonia disappeared and then reduce it again to see if her symptoms remained alleviated.  We also had to film her progress daily with each increase of the dose and send it to the Professor and all his Neurologist buddies.  They were making a documentary about her.  It was a miracle drug.  Her symptoms disappeared, but unfortunately two weeks after coming off the L-Dopa the Dystonia returned with vengeance - now her whole body was affected. So, back to the drawing board we go and back on the drug.  Caragh remained on L-Dopa until she was 14 years old.

Christmas Morning with her brothers - 22 months old

Over the years Caragh's disability became more apparent but thankfully the Dystonia settled down.  It took me a long time to get over not having an official diagnosis for her.  I felt that if there was at least a name for this thing I could cope better and would have something to work with.  The Segawa's Syndrome diagnosis was ditched as her intellectual problems became more apparent. Caragh presents closest to that of children with Angelman's Syndrome except she is not completely intellectually disabled, so I stick with that because the profile of a child with Angelman's is 99 % my angel Caragh.

Caragh on dress up day at school in Doha with the wonderful Ms Margie

Whenever Caragh's birthday comes around it brings back a lot of memories of the intense period of Dystonia, Doctors and Diagnoses that are etched in my memory as if they happened yesterday and not 23 years ago.

I can honestly say Caragh is the most beautiful gift I have ever been given, the hardest challenge I've had to face and the biggest lesson I have had to learn.  I love her more than words can express and I am very very grateful to her for teaching me absolute unconditional love and acceptance.  It doesn't get any better than that let me tell you.

Happy Birthday Caragh my angel xxx