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Nicolette's Story

 

 

    This is the story of our daughter Nicolette we all live in New Zealand a small country consisting of two islands located just off to the side of Australia. It has a population over the two islands of about 3 million people and children like Nicolette are extremely rare!

    This was our second child, so the progress through the pregnancy was to have no surprises until that fateful day at 22 weeks when all movement stopped. I was not going to admit that anything was wrong and so a visit to the Doctor did not occur till 2 weeks later when movement was being felt again just not so strong. This was to be the beginning of the start of our lives together as the most notable thing to the Drs was the lack of growth in the baby.  Tests, to see if there was any Chromosome abnormalities followed the endless round of ultrasounds until her delivery date in February at 36 weeks.

        Nothing was found to be wrong and we were left with an unknown as to the problem with the most promising suggestion being placenta insufficiency. Armed with this possible diagnosis an elective cesarean was performed on 14/2/96 and Nicolette Jane Half entered the world weighing 2lb 14 oz (1.2 Kg)  and length 15.8 inches (38cm) long.

    What followed was five weeks in the SCBU, where to the surprise of all her caregivers she responded quickly but never really gained any weight. Home was just a natural progression in the life of this healthy but small baby.

    Days turned to weeks, which turned to months without the massive weight gain, and growth spurt that we had all hoped for. Phone conversations with experts about the growth were met with a wait and see attitude, after all there was plenty of time for her to grow and catch up. These were the same experts that when they finally agreed to meet her at their clinic exclaimed shes miniature!  This started the possibility of Growth hormone deficiency or a similar condition.  Tests again but with no answers everything came back normal, the most significant No Growth Hormone Deficiency!

    After many months of wait and see she was finally started on Growth hormone on compassionate grounds to see if they could boost her growth.  Nicolette was just 2 yrs old , 25 inches tall (60cm) weighed 10lbs (4.5 Kg) and her head circumference was 15.6 inches (37.5 cm) The experiment lasted from March 98 till June 00 before it was decided that even with a very high dose there was no significant gains and it was discontinued.

    At the same time all this was moving along Nicolette developed a squint in both eyes and was noticed to be farsighted. The squint was operated on in the July 98 and surgery was considered to be a success (beautifully straight eyes) for 6 months. At the end of the 6 months it was just not possible to convince ourselves that the eyes were straight when looking straight on one eye would almost disappear yet again! We decided then that binocular vision could not be saved and that any further surgery was only cosmetic and so it could wait until she was much older. With what was to follow this was definitely the best choice we could have made.

    During Jan 99 Nicolette had her second stroke the first one that we had noted, but the second as the tests indicated there was a first stroke in utero yep at the time I noticed the lack of movement.
Now we were into another round of tests for a different set of Drs.- CAT scan, MRI and Arteriogram with all this information being sent to Boston USA for review by Dr. Scott with a possible diagnosis of Moyamoya.
Finally nearly nine months later we had a definite (sort of, maybe) diagnosis Moyamoya syndrome. All during this time Nicolette had been having episodes of turning blue, or loss of coordination and at one time in the July a period of lost speech again later proved to be another stroke. Her pediatrician Dr. Patrick Kelly prescribed aspirin to thin the blood after consultation with Dr. Scott in the USA. Thankfully for Nicolette after 4 known strokes and numerous TIAs she has maintained all gross motor functions - but unluckily has been affected in her fine motor skills, has Aphasia and some learning issues have been identified.

    By December 99 a visit to the Neurosurgeon confirmed that blood flow to one side of the brain was at about 40% of normal and the other side down to 10% normal. Surgery was imperative and urgent to give her a new blood supply before the carotid arteries were completely blocked by this syndrome (cause unknown). The best option was to take Nicolette to Boston where this surgical procedure has been performed by Dr. Scott who is a leading authority on this condition, but due to her worsening blood flow flying to the USA became to much of a risk. Surgery was performed in the Jan00 at Starship Hospital by Dr. Andrew Law following the procedures outlined by Dr. Scott and there has been nothing but improvement in Nicolettes condition. However the biggest question on most peoples lips was had she grown!  No!!!. She was now 29inches (70cm) tall and weighed 18lbs (8Kg) and 4 years old!

    Nicolette has two rare conditions that are totally unrelated Primordial Dwarf and Moyamoya neither one condition affects the other.

    The improvement we have seen has been in the areas of speech she has a very wide vocab but is still only able to say 3 words at a time no sentences. Her fine motor skills have improved and she is now able to draw a circle although she is able to identify shapes, letters and colours easily. Glasses to correct the far sight and help the squint were prescribed in Oct 00 and definitely helped Nicolette to make more sense of the world that she sees.

    Nov 00 and we have been faced with a new problem Nicolettes teeth are malformed in that they are on short roots and became loose and needed removing. As well the enamel appears to be weak and has been worn away on some teeth so necessitating dental work on the remaining teeth. It has also been determined that the permanent teeth underneath are misshapen and with short roots, this will entail caps on the teeth that can be fixed in and removal of the rest

    One thing has never changed for Nicolette she has always adored her older sister Annalouise (now 9yrs old) and tries to copy everything she does. Annalouise is a keen tap dancer and we spend many hours at dancing competitions and although Nicolette enjoys copying she has no plans to start dancing herself. When asked though she is very keen to explain to others with her limited speech that Annalouise dances on stage and wins lots of trophies I sometimes think she is more proud of Annalouise than I am if that is possible.

    Today Nicolette is nearly 5 years old and just preparing to start Kindergarten 3 mornings a week. She will attend school later on this year with a teacher aid to protect her because of her size and help her with her learning issues.
She is currently 31 inches tall (74cm), weighs 22lbs (10Kg) and head circumference 16 inches (38.4 cm) she wears size 12 / 18 month old clothing and size 2 shoes. We dont know if she will have another stroke it is always in our thoughts, but with Gods guidance we will continue to ensure that Nicolette enjoys every minute of her life and reaches her full potential.



Linda and Gary

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This page last updated 12/31/2001