My Story
Written by My Mum

This is the story of my brave little Kade.
I had an easy pregnancy and KADE was a healthy baby boy who used to wiggle around in my tummy and kick at his dads hands when daddy used to speak to him and rub him….
My precious boy was born on the 14th September 2012 @ 12.24 noon. He was perfect, 3.41kg. and his APGAR scores were high. He latched very easily and in the first few days in hospital woke up every 2.5 to 3 hours and all was well….However we did make mention of how soft his cry was and when he got a little angry instead of screaming louder he would kind of breath hold. His little right hand was also a little floppy and did not go into tight little fists
Over the first few weeks everything seemed fine, perfect in fact… Kade stole our hearts and became the apple of our eye. Although, in hind sight a lot of people would comment on his cute soft cry. Like with all newborn babies he was very floppy, in fact we used to call him our "squishy". At this stage I tried to put him on his tummy to get him to lift his head but he could not and I put it down to him being only 4 weeks old and a little lazy...
I had difficulty breast feeding him and he had not gained as much weight as he should have by 3 and 4 weeks. I was advised by my clinical sister to persist with breast feeding.
I did persist but unfortunately developed mastitis and passed on bacteria to him and at 5 weeks old he had to swop immediately to formula.
The reason I tell u this, is his little tummy was moving up and down like crazy and he seemed uncomfortable. I put this down due to us changing him over to formula and that he may have tummy cramps.... if only that had been the truth but dreadfully it was not the case!
A week later we took our beautiful "squishy" for his 6 week check up. We used the same pediatrician who delivered him and also did two check ups in hospital during our 3 day stay.
As we walked into her rooms, KADE was crying, his usual soft, tiny cry. She immediately asked if that was his usual cry due to it being so soft, and couldn’t hide her concern.
She started his check up and checked his reflexes in his knees, elbows etc....he had no reflexes! She immediately said she is very worried about him. To hear these simple words as a mommy and daddy sends shivers down your spine, that no one can imagine and your brain resists to absorb. Al and I just looked at each other and I remember my heart racing in my chest, my world started to spin and an immense panic begun to scream from somewhere inside. We continued to ask a few questions, wanting all the answers and solutions immediately, however honestly there were 100000000 questions to be asked… And a 10000000 more that I still ask today… Where did we start?
Originally the pediatrician thought it was a neurological issue but did say it may be muscular.....however KADE was super aware and his little beady eyes followed us everywhere and his captivating smile would fill the room.
Two days later, our baby boy was admitted to the pediatric ward at the Sunninghill hospital where he was born. This is where we met our lovely neurologist, Dr Wilson.
They were forced to prick our baby's tiny little foot to draw blood that was needed to be sent for testing as they could not find veins large enough. This broke my heart and on this day watching him cry and pass out from exhaustion, we made him a promise, never to allow him to suffer unnecessarily no matter what the test results proved. I wanted to take his pain away, I remember sobbing watching them prick and prod my little tiny baby angel.
Our neurologist did a more detailed examination again checking his reflexes and his primal startle reflexes. She immediately said he did not have a neurological condition and said it looks like, SMA type 1! We asked what it was as we had no idea. After she told us we asked how soon can we start treating it??? At this point our world fell apart as she said" THERE IS NO TREATMENT OR CURE". !!!!!!I was shocked, devastated, I went dizzy and felt like getting sick… HOW can this be so in this day and age? HOW can this be the case for my little boy for our baby boy who we so loved and adored?
They cancelled his MRI as our Neurologist said due to how weak he was already and knowing what we were in all likelihood dealing with he would not be strong enough to handle an anesthetic. The risk was too high and she did not think it was necessary.
We went home… and within days his sucking and swallowing deteriorated. He could not feed properly and he was not getting enough food and nutrition.
We were introduced to our nutritionist, Inge who ascertained that we had to get his feeding tube fitted and we learnt very fast how to suction our baby boy as well as feed him via his NG (nasal gastric tube), this was taught to us by his amazing physiotherapist Natalia.
In only 5 days after getting his feeding tube fitted, he stopped breathing while I was taking him for a walk in his pram....I found him blue and cold. I did not know how to do CPR (which I now can do very well, and every parent must, must learn CPR.). Thank the Lord there was a man in our road when I screamed for help, he came running and he knew baby CPR and between him and a paramedic (who was off duty and lived at the fire station in our complex) resuscitated him.
We rushed him to hospital in peak hour traffic, in our cars as there was no time to wait for the ambulance. He was still blue but the paramedic had found a pulse. He was admitted instantly to neonatal ICU where he stayed for 4 days. During this period Kadie stopped breathing again and had to be resuscitated by 3 ICU nursing staff and our neurologist. Dr Wilson our Neurologist was concerned at this stage as he stopped breathing whilst on oxygen. For the rest of the day his O2 levels would not stabilize and they had him on 4L of oxygen for the day. Eventually that night he stabilized. I breathed. We stayed by his side for as long as they would let us. Breaking every rule and picking him up, cuddling him and holding him. I got him tangled in all his wires and tubes a few times, but the most important thing was to hold my baby boy.
His Pulmonologist did not think he would last the weekend, as his little lungs were very weak and he was totally oxygen dependent. Our worse fears were then also confirmed, his blood results arrived back and it was confirmed that my little baby had SMA TYPE 1.
Things seemed to be crashing around us, in the nicest way possible (if there is such a thing). We were told to gather our family to the hospital and say their goodbyes…… We were blessed and given a private room with him, an ICU nurse and me and his Daddy Allan were allowed to stay with our baby in hospital for a week. At this point I would like to say a very big thank you to the Sunninghill hospital for making this possible. I kept him in bed with me as much as possible and the ICU sisters and nurses were truly GOD sent.
He surprised everyone, our brave soul fought so hard. He surprised the doctors with his strength and fighting spirit, although his oxygen sats were very erratic.
At this point we learnt CPR in hospital, and decided to set up his oxygen, suction machine and monitor at home. Geee wizzz we became ICU nurses very quickly. Survival mode kicked in and there was nothing we weren’t willing to do, learn or buy or raise money to buy if we could not afford it… Anything to help our baby “Squishy”.
Kade needed 24/7 care. I got about 2.5 to 3 hours sleep a day, on a good day, but was running on love and adrenalin. I learnt to shower and dress in 10 min flat (trust me this is impressive), Daddy luckily was able to be home a lot more and my Mom and my neighbor Annalie, who is my best friend were always around. His aunty Fiona and cousin Kaylin from Canada had come to stay with us and they were God sent. My Sister Natalie his “god mother” was amazing and like his other mommy, They gave him boundless love and attention during their visits.
They all helped care for Kade, sing to him, play with him and cuddle him. He loved being in our arms and up in what we called his "happy place" up on our left shoulder. His best songs were Twinkle twinkle little star and Jesus loves me, he also got introduced to BARNEY and loved little butterfly.....We had an incident at least every two days where his oxygen levels would drop.....we would have to increase his oxygen. And on those dreadful moments when is his heart rate fell too we would have to resuscitate him. The beeping alarms of his monitors became the normal hum of our home, and ironically a sound I miss today… It seemed that his feeds were affecting his heart rate and we worked with a nutritionist to ensure he was getting enough nutrition, proteins, fats etc.....
He was put onto Infatrini which seemed good, however she had to start mixing foods and this caused more mucous and so we had to suction him a lot more. Kade hated being suctioned almost as much as we hated doing it. However eventually he understood it helped him and would moan and cry but quickly calm when he realized the relief it brought and the bubbling mucous would calm for a few minutes
He took a real bad turn after just 2.5 weeks. We knew at this stage after understanding the effects of SMA on such a small baby. We had read and searched for information. Google and other family’s stories guided and taught us.
On Sunday 2nd December he had a very tough day and night. Annalie and Natalie spent Sunday afternoon cuddling him and loving him, and this seemed to calm him. We spent 3 hours giving him mouth to mouth on Sunday eve as it was the only way we could bring his oxygen sats up. However again, when we fed him he would have another attack and battle with his O2 levels.
On Monday morning he was suffering terribly. He was pale and sweaty and so very exhausted.
His oxygen was on maximum on his machine at 5L and it was not heart was breaking and I was sobbing as I knew his little body was shutting down and our worst fears were coming true. I needed to bravely face my promise to him, to not let him suffer. At this point I was torn between, do I rush him back to ICU and fight for a few more days, realizing it would be for our benefit and knowing how badly he was suffering….Or do we care for our angel at home?
Through all of this our faith in God increased and our journey with him was enhanced 10 fold.
As his Mommy and Daddy we knew the time had come.....his little nose was starting to bleed from the high flow of oxygen. And I think one of his lugs may have collapsed.
I prayed so very hard for strength and guidance from God. I could not bear to watch him gasping for air.....With God’s guidance and love we took the most difficult decision any parent will ever, ever have to make..... (tears are streaming down my face). And we turned his oxygen down...we held him so very close and when his oxygen and heart rate were so low we disconnected his oxygen pipe and probe and took him into the garden downstairs.
It had been raining and the sun had just come out. He left us and this world, in our arms, next to a rose bush in full bloom of pink roses.
There are no words to explain the heartache. But looking down at him at that moment I knew he was at peace. No more battling to breath and gurgling mucous, sweating and pain… No more suffering for our little Squishy…
He passed away on the 3rd December 2012, just after 12 noon. He was only 11.5weeks old. This is a story filled with love and complete faith in God. I pray daily to God for the strength to go on. I have so many questions. I'm not sure if he has gone to a better place because as his parents, we can in our human form only imagine the best place for him is with us.
However we are guided by God’s will and have to find the faith to believe he had his journey planned and a very real reason for it. KADE came to this world and in his short life taught us a life time of precious lessons… He has made me slow down a lot and smell the roses, I want to be a better person and we know for sure life is short… way too short.
An amazing story which we have posted on his site explains his journey. It’s called the” BRAVE LITTLE SOUL”. I found it one morning at 3.30 am whilst looking for a medical explanation as to why KADES heart rate was so erratic. I truly believe in my search when constantly asking “WHY”, God put this in my path. And this is how he speaks to us. He does not write in neon letters across the sky, he brings us amazing things and people to help us on our journey and help us to understand a little better.
We have started a foundation in South Africa to help other SMA families in KADE’s honor. Kade brought us a life time of love and taught us amazing life lessons. My precious angel Kade Alex MacKinnon..... Mommy, daddy, Jordie, Natalie, Jamie, Joshie, Annalie, Tayla, Nana, Grandpa, Lorne, Fiona and Kaylin miss u to the moon and back and we thank u for loving us back and for the memories you left us with.
Play with the angels my darling and breath freely. WE WILL LOVE U FOREVER Xxxxxx