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Noah Cantius

Cantius

 

In July 2006 at five months pregnant, my husband and I were told that our baby had a devastating and life threatening heart condition. Hypoplastic Left Heart Syndrome. What started with the excitement of seeing our baby's little feet and toes on a monitor ended by being ushered into a darkened room with boxes of tissue everywhere and a very somber Doctor looking at us with agony to have to tell us such devastating news. We were told the baby's chance of survival was zero unless the baby underwent a series of open heart surgeries, one at birth, another and 6 months and third at 3 years of age.

As the weeks progressed, the appointments were endless and eventually we grew tired of the references to "it" and decided we needed to give "it"a name. We chose the name of someone who withstood the biggest trials and storms in history. Noah.

We were asked to move to Edmonton a month before Noah's due date, in case he came early. His surgery and care following his birth would all be done at the Stollery and we were told to expect to stay 6-10 weeks following his first surgery.

Noah was born on November 19th, I did not see him when he was born. They whisked him away to put him on life support immediately. Roughly an hour and a half later they had him stabilized and ready for transport to the Stollery. They wheeled him over to me, there was so much machinery and tubing surrounding him, that I could only see his leg, which was purple. I remember asking if he was alive. They told me yes but they had to go right away. I didn't meet him for a day and even then I was only aloud to touch him but not stroke him. He was so sick, the mere act of stroking his skin would burn too many calories and he couldn't afford it.

On Noah's 11th day of life, they decided he was strong enough to undergo his first surgery. The nurses permitted me to hold him for the first time. It was a difficult process but I needed it, I think he did too. Watching him leave for surgery was the most horrible moment I'd known until that point.

Noah stayed on life support for a month following his surgery. The days and weeks after his surgery were filled with ups and downs. Sometimes he'd be doing so well and then mysteriously he would take a turn for the worse and each minute he was clinging to life. I spent 8, 10, 12 and sometimes 24 hours at the hospital, watching his chemically paralyzed body, listening to machines breathe for him and staring at monitors, feeling pangs of joy and fear as his numbers improved or declined. Noah had awful raw bed sores that wouldn't heal and became contaminated over and over as he had bowel movements. He constantly inhaled his stomach contents and got chemical pneumonias. He tried desperately to pull the breathing tube from his nose only to be shackled down with ties. He cried big wet tears, but no noise ever came because of the breathing tubes. I sometimes counted upwards of 15 or 20 needle marks where they'd tried and failed to get IV's started. Including on his shaved head and feet.

In late January we had Noah's eyesight checked. We learned the Opthamologist had seen something called cherry red spots. This meant Noah was not only completely blind but he also had a metabolic disease. Metabolic diseases are life threatening and there is no treatment. It can take as little as 6 months or as much as 10 years but your body will lose it's ability to see, to hear, to move, to eat and ultimately to continue living...and you just deteriorate bit by bit. I couldn't believe that things were getting worse.

We asked to be transferred to the Children's in Calgary, where our family could support us as we lived out whatever future was in store for us.

Two weeks after arriving in Calgary our son suddenly became very ill and wound up in ICU. He had a malrotated bowel. It was life threatening. "What isn't?" I began to think! Noah had this repaired on February 14. He also had a tube fitted into his stomach so we could feed him as he never learned how to eat after all that time on life support.

At this time we learned that all the testing for metabolic diseases had come back. 19 out of 19 were negative. We were overjoyed. We just had to deal with him being blind now. At the end of April we took Noah home for the first time, a few days later Noah very suddenly became very sick. We had to call an ambulance on route to the hospital where we watched on in the Emergency room as they frantically worked to keep him alive. Stabilized on life support, he was airlifted to Edmonton a few days later to have the second stage of his heart repair done, a little early.

Within a few weeks we were back at the Children's...but again one day he suddenly deteriorated. This time we were told there was nothing they could do for his heart. Either we let him go or we persue a transplant.

I remember telling Christian that it wasn't fair to put Noah through more, that I believed he was telling us he tried his hardest but it was time to respect him and let him go. Christian felt strongly that we shouldn't take away opportunities for Noah to survive. It didn't take long before I came to agree with this.

A few days later, at just 6 and a half months old Noah had his third open heart surgery and was given a new heart. Noah was a different boy moments after arriving back from surgery.He was instantly pink for the first time in his life. It was amazing the difference a healthy heart made. Noah recovered quickly. Within days he began smiling. After an almost fatal sickness a few weeks after his transplant, Noah spent 6 long weeks in ICU. When he recovered we finally took him "home" to our apartment in Edmonton. It was a trying time for us. Alarms went off 17 times a day for various meds and feeds. We were physically, psychologically, and emotionally exhausted. We spent hours upon hours standing and rocking Noah to soothe him, only one position would do and I was developing major back and shoulder pains because of it.

That same month we learned that there was another miracle in the works for Noah's life. His vision was improving. There was nothing to explain this said the opthemologist, except that it's a miracle.

After the mandatory three months post transplant spent in Edmonton, Noah was to have a biopsy of his heart and then we could go home. What nobody could have guessed was that his new heart was very badly diseased, a side effect that comes with transplants but doesn't usually occur for 15 years or so.

We were told that nothing could be done except a re-transplant. Noah was back on the transplant list 3 months and two days after his first transplant.

Five months later Noah's biopsy of his heart showed that it had had miraculously improved. The Doctor was baffled and mumbled something about "perhaps the new drugs..." I said "this is what we've been praying for" and he said "yes, the power of prayer" and smiled knowingly.

A month later Noah's vision was checked and was considered "good". He is far sighted and can see the love we have for him written all over our faces. The Opthmologist is always so confused and can only explain it as a miracle - which we love.

We are privileged to say that we have celebrated two "re-birthday's" with Noah and he continues to do well. We will soon celebrate his third birthday, a milestone I can't believe he's reaching! Noah's high needs continue to be a struggle as he is developmentally the age of a one year old or less. Life is very much regimented by feeding and med schedules and he still does not eat anything by mouth. He needs constant care from either a nurse or us and as such Christian and I work opposite hours and see very little of each other. No matter how difficult life was and continues to be, we know too well how fortunate we are that he is here with us. The difficult times are overshadowed by the love we have for Noah and the love we receive from him and the knowledge of how close we came to not having that. I endlessly shower him with kisses and cuddles and tell him I love him. I will drop anything I'm doing to cuddle him and make up for all the times that I couldn't. Having come so close to losing my child on so many occasions I have an overwhelming sense of gratitude for each day that we have and each moment I am afforded to love him, to touch him, to smell him, to play with him, read to him, to watch him and make him laugh that wonderful giggle he has. I cherish our time together and am so in awe of him and all that he has overcome. He is my hero.

Sarah's Grandpa said to me "cherish every moment with him" when we met the day we were surprised and honored with this incredible gift. I told him that we do and I can easily promise that we will continue to all the days we are granted together. We can't thank you all enough for honoring the trials we've had in such a loving and generous way. We've certainly had help along the way to make ends meet financially, but this is like an unexpected treasure at the end of a very arduous journey we had only hoped to survive! To be told to do something fun or special with this gift gives us the freedom to do something we wouldn't have otherwise considered and you know what? We will! Thank you all, from the deepest parts of our hearts!

Financial Support we received that other's can look into:

  • David Foster Foundation (For family's with a child needing/having a transplant)
  • FSCD (Government Sponsored support for family's with a disabled or severely ill child - contact your Social Worker for more information)

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Sarah Faith Hogan

november 8, 2004 - january 22, 2006

The Sarah Faith Hogan Memorial Foundation was formed in loving memory of Sarah Faith Hogan and is dedicated to the selflessness and courage of Sarah’s grandfather and mother, Chuck and Cathy Hogan.

 

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