I remember feeling slightly disappointed that he was only 6lbs 10oz, because I thought second babies were supposed to be heavier than the first and Isaac’s brother Jacob, had been 7lbs 8oz.
Isaac got 9 and 10 on his apgar score, he sucked the breast straight away, his head looked a little funny at the back but since the paediatrician hadn’t said anything, I thought, thank fully, I had another perfect baby.
Isaac was a small, sweet sleepy baby, for the first five weeks, and then I noticed he would do a funny thing, turn red in the face, his body would stiffen, and he would appear to have trouble breathing, our journey had begun.
We made several visits to two different Doctors, and described the lack of weight gain, the projectile vomit, not smiling, not fixing or focusing, and those funny little’ red in the face’ things, and both of them diagnosed sour milk, gastric pain, reflux, and said he’ll grow out of it and babies don’t all do things at exactly the same time. Finally Isaac had a seizure in the Doctors office and we were immediately referred to the only Ped. Neuro in Kingston who immediately admitted us to The University Hospital in Kingston. I remember standing in the corridor of the surgery while the Doctor called the Hospital, just feeling as though this was not happening to us, to me, there would be some sensible explanation and of course a cure, this was a minor hiccup and we would pass through it and recall it in the future as one of those stories you tell over dinner and we would live happily ever after.
Ward 16 is the children’s ward at UWI (University Hospital of the West Indies), and we were given a little cot in the corner by the window – it was 9pm at night by this time and nurses were busy asking me questions, filling in forms, while Doctors examined my eleven week old baby
The next day we saw the Head of Paediatrics and were sent for a CAT scan. I remember waiting outside with Isaac, so unaware and a sweet nurse holding a little boy who was to go in before us, his parents hadn’t come to visit him for days and he used to cry all the time, the nurse sat with him and softly sang Hush Little Baby Don’t Say a Word Mamas gonna buy you a Mocking Bird, my tears fell.
The CAT scan showed a Neuronal Migration Disorder, Pachygyria.
Five days later we flew to London, and went to Great Ormond Street Hospital for Sick Children, more tests, more examinations, more questions, more seizures, another diagnosis, Isaac’s MRI showed Polymicrogyria.
The Doctor there told me that if we could control Isaac’s seizures he would probably walk and probably talk, with a lot of stimulation. What a relief, this was obviously my purpose in life, this little boy, he would walk and talk and I would physio him until he did.
After four weeks in London, we flew back to Jamaica, with medicines and hope.
Six months later Isaac’s seizures stopped he was happier, his head control was getting better, this was all going to be alright.
In June we flew back to London for another check with Great Ormond Street. The Doctor took one look at Isaac and told me that although the seizures had stopped, Isaac had not made sufficient progress in his development to make her think he would walk or talk, indeed she now felt that Isaac would never be able to do anything, he may become a little more social, his vision may mature but beyond that no hope really.
I left the hospital in Portland Street and walked down Regent Street to the Royal Academy in Piccadilly, with Isaac in his sling. I realised as I walked that this was as bad as it gets, that despite all of this, my life, our lives must go on. So Isaac and I walked around the Summer Exhibition and pretended to be two normal people!
Isaac is about to celebrate his second birthday, after being seizure free for a year his seizure activity is on the increase, but he has indeed become more social, with lots of smiles and occasional laughter, he is more responsive, he is tracking sound, he loves to be held, he loves to be driven, he loves riding in the Baby Jogger behind Daddy’s bike, he loves the bumps and he loves the breeze in his face.
Isaac has brought us many things, perhaps the greatest have been acceptance, tolerance, compassion and strength.
He has introduced us to many incredible people, from physical therapists to other parents dealing with the same or similar situations, with their equally special children. The kindness of strangers has never been so evident since having Isaac. We think of Isaac as a blessing, a gift and a teacher.
We have no idea what the future will hold for Isaac. The Doctors are suggesting G-tubes and pH probes, changing seizures medications and I cannot help but think things won’t get better, but rather there may be periods of calm amongst the rough water. August 1999
Update: March 2009
Ten years have passed and much has happened. Isaac will be 12 in August. Isaac hasn’t changed really, he has the same gentle spirit, he smiles despite everything, his favorite things remain consistent, being with people, sitting on your knee, hearing the noise of his brothers and generally any noise, air chisel, hammering, dogs barking, loud voices loud music! His abilities remain the same, except he is more social and responsive. Just as the Doctors had suggested ten years ago, there were pH-probes and g-tubes in our future! The water certainly did get quite stormy as Isaac battled recurrent aspirational pneumonia’s, hospital stays, seizure increases, sleeping difficulties, but his main battles have been respiratory and feeding and therefore ‘failure to thrive’.
Isaac started school here in 2006 and made it through the beginning of his first winter, until February 2007. A serious pneumonia sent him 300 km. to the ICU in London, Ontario, via air ambulance. After a prolonged stay there and in SoldiersMemorial Hospital, Orillia, Ontario 50 km. from home, and countless discussions about feeding, we decided to give him a g-tube, really encouraged by the possibilities of a less stressful life for all of us!
Isaac had his surgery in May 2007 at Sick Kids, all went well, with the procedure and we had much hope for the future!
Isaac could not tolerate the amount of feed he needed to maintain his weight, it fluctuated between 23lbs. – 28lbs. There were a few more aspirational pneumonia’s to deal with, before we got him stable, by slowing down the feed to 25mls. per hour and running it over 24 hours, still not adequate. There were constant daily adjustments to the speed of the pump as Isaac’s tolerance went up and down, no two days are ever the same!
It is now almost 2 years since the g-tube and it certainly has made a difference to our lives. Isaac has been too unstable to return to school, he lost, not gained weight, and we now have oxygen, suction and nebulizer at home, as his chest infections continued.
However, in January (2009) his Doctor introduced a new formula, which he is tolerating well, it has a higher calorie content, 2 cal/ml, as it is thicker he is able to take more volume and absorb more calories and he has gained 3lbs. in the last couple of months, so that is encouraging.
It is joyful to see Isaac smiling and laughing and responding to the regular family noise. We realize everything with Isaac is ‘as slow as molasses’, he has had two new bottom teeth coming in for 2 years, but if we have few expectations, remain patient and vigilant, changes take place nonetheless!
We have become much better at managing each new situation rather than hoping things will get back to ‘normal’, we just keep accepting the ‘new normal’!
I will end as I ended Isaac’s first web-page “We have no idea what the future will hold”, what I do know is that I am better prepared for what may come than I was ten years ago, I am much more accepting and patient and have learnt how important ‘triage’ is, in all sorts of life situations, for that I am grateful to Isaac.
Update: February 2011
Isaac Dylan Munro Moyston died on 9th February 2011, aged 13.
Isaac had been having chest infections/obstructed airway issues since the beginning of December, he had three courses of antibiotics at home, over a six week period, he would finish the course and seem to get better and then get sick again.
On Wednesday 26th January, after a difficult night, I called his Doctor and she asked that I bring him straight to the ward where she would admit him.
Isaac didn’t seem too bad and his Doctor said it was just a matter of supporting him through this, within three days of being at the hospital Isaac’s condition deteriated and he was acutely ill, but within a week he had stablised and plateaued, not as desperately sick but not seeming to get better either then Isaac just seemed toget tired, his lungs continued to sound terrible, his fevers persisted on and off, his skin begin to blister and perhaps the most telling sign was that he had virtually no platelets in his blood.
On Wednesday 9th February, Isaac peacefully ceased breathing in our arms.
I think he was waiting for us to let him go. His loss is monumental to our family.
While the grieving continues unabatted, I hope in time we will come to focus on all the good memories of Isaac, we are so grateful for having had the oppportunity to know him and so blessed to have become better people because of him, we miss his little being but take comfort in the fact that he is free.
“When you are sorrowful, look again in your heart and you shall see that, in truth, you are weeping for that which has been your delight” Kahlil Gibran.
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