Linda G. Hill

Life in progress

All About Alex – #AtoZ Challenge

50 Comments

I knew Alex was going to have health issues when I had my first ultrasound, 10 weeks into gestation. He had, I was told, fluid around his heart and at the back of his neck. Down Syndrome was ruled out a few weeks later via amniocentesis. It wasn’t until he was born and transferred to the nearby Children’s Hospital of Eastern Ontario that he was diagnosed with the second most prevalent syndrome: Noonan Syndrome. To the geneticist it was obvious at first glance. Barrel-chested; low-set ears; thickness in the neck; and widely spaced, bright blue eyes. It was all there, on top of the multiple heart issues.

His prognosis was bad. Without surgery, his cardiologist told us his heart could no longer pump oxygen through his bloodstream. He would die within a year. The surgery itself came withΒ  a 50/50 chance of survival. It was a tough decision, yet an obvious choice. Just short of two months of age, he went to the operating room. About half-way through the procedure, the surgeon came in to let us know that Alex’s heart had stopped and he had lost all vital signs. They got him back after a few minutes by providing open-heart massage, but the surgeon said he would not resuscitate him again. It was time to close the suture and hope for the best. A couple of hours later we were told our little boy had survived.

The reason I go through this history when I’m here to talk about his deafness is, first, to explain why I reacted the way I did when I found out he couldn’t hear, and second, why he can’t hear. He was about four months old when I began to realize he wasn’t responding to noises. Since he was still in the hospital (he didn’t come home until he was eight months old), I had him tested right away. When the test proved he was profoundly deaf, I felt sad that he couldn’t hear me sing to him, and that he would never be quite like the rest of us, but hey – he was alive. Years later, I’m still realizing the impact of his difference in abilities, as you’ll see as the month goes on. Noonan Syndrome doesn’t include deafness as one of its genetic anomalies. The doctors told me it was likely the lapse in vital signs during the surgery which injured his brain. I had to wait to find out if he would have any other symptoms – as it turns out, I’ll probably never know.

It’s been a roller coaster of ups and downs, with oh so many laughs and challenges and opportunities to learn along the way. I hope you’ll enjoy reading about the ride.

Just before Alex finally came home (if I remember correctly, the weekend of the CHEO telethon in 2001 was his last weekend at the hospital) they filmed some of the inpatients to show at the end of the news. The baby at the end (2:24) is Alex.

Author: LindaGHill

There's a writer in here, clawing her way out.

50 thoughts on “All About Alex – #AtoZ Challenge

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  11. You two are so brave and beautiful. I’m glad we are getting to read about your son πŸ™‚

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  13. Wow Linda. Thanks for sharing your’s and Alex’s brave journey. πŸ™‚

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  14. How lovely that you are basing your A-Z on your son, he looks very cute as a baby πŸ™‚

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  15. Such a beautiful baby. Thanks for sharing his story, and the video. πŸ’

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  17. Hard start to life. ❀ ❀

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  18. Brave lady & tough little guy. My wife has just been touching the screen shot of his picture; her comments ‘He’s beautiful,’
    All the very best to you and yours.

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  19. You have such a blessed child, Linda. I will enjoy reading about him and how his life impacts yours.
    Have a great weekend!
    Lori

    My A2Zs @ As the Fates Would Have It & Promptly Written
    Follow Me (Ravyne) Twitter|Facebook

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  20. I feel that your child is a gift of life that is a bit more unique than the children born with no hurdles. I am sure you and your family had some really hard times. How lucky he is to have you for a mom and how lucky you are in turn. It is sad that children that were born with ailments years ago were just locked away. Labeled as something less in society. I am glad you and your family have each other. How amazing you are. Looking forward to letter B

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  21. Linda, if I remember well, he was not deaf at the beginning because Fred had taped some music for him and he seemed to hear it. And something I will never forget it is on Christmas day, not long after his surgery, when I visited, he was of course (among many other things) on a heart monitor and when YOU were talking to him, his heart beat kept changing like if he recognized your voice.

    Last summer, when he visited with Luc, he was running in the back yard and eating a few raspberries. Never in my life I would have imagined him doing this after seeing him at the hospital.

    Parents who have healthy children don’t always realize how lucky they are.

    I love you Alex.

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  22. Oh Linda. What a survivor Alex is and I’m sure he brought so much hope in your life. Thank you for sharing such a personal life story with us. My heart ached and I now am even more in awe of your strength. Loved your post!

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  23. You and Alex remind me of blessings uncounted. I had maybe two minutes of terror after delivery, and I remember the terror like it was yesterday. I cannot imagine how brave and strong you had to be.
    His video clip was downright precious though. Alex is still a cute kid. And the stories you tell about him are cute, too, mostly, because you know, kids, lol.

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  24. How frightening for you! Surgery at just 2 months? I’m not sure I could have handled that.

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  25. Thank you for this most enlightening post. Alex is so very lucky to have a mom such as yourself. Best wishes on your A/Z journey!

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  26. I didn’t know y0ur struggle. Huge respect goes out to you from me. Looking forward to reading your next post.

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  28. I often think when I see your posts of the challenges you face behind your writing. Lovely to see Alex on screen.

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  29. Okay, 93 NICU days without one single surgery was horrible. I can’t begin to imagine 8 months. Thank you for sharing your dear boy’s story. Sometimes I get stuck in the “what I missed out on” with having a pregnancy go completely wrong, but there have been some amazing things come out of our journey. Hugs.

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  30. Nice choice of theme for the challenge, personal stories are the most engaging

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  31. Our stay at the NICU lasted only twelve short days, and, for most of that, Elijah was in a coma. Unlike Alex, we had no warning of trouble – it was a textbook pregnancy, right up until the profound brain injury at birth.

    I’m going to cry some, this month, Linda. For Alex, for you – for us, and our little boy who never came home.

    But there’ll be healing in these tears, and deep gratitude for the gift that Alex is, just being!

    All my love, Mama ❀

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    • Thank you, Shan. πŸ™‚ Being that I was so close to losing Alex, I have a really hard time with those who didn’t make it home. I’ve known a few Moms who weren’t as lucky as we were. I just can’t imagine… and trying to scares me to death. I do hope you find some healing in your tears. ❀

      Liked by 1 person

      • I’ve found tremendous healing in focusing on joy. I feel like, if we all get as much of that as we can, it somehow honors the child who couldn’t have that. Also, he donated his heart valves, so there’s hope that the girl who received them has a heart full of j0y.

        But I love the stories of babies who DID make it home, to bring joy to their own families, in living ways. ❀

        Boldly Going Through the Alphabet!
        @shanjeniah
        Part-Time Minion for Holton's Heroes
        shanjeniah’s Lovely Chaos

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  32. I can hear, but can’t see. So, I wouldn’t likely have seen him, but I had just been obsessed with watching those telethons in those days, after needing children’s hospitals for myself and my younger brother. I was likely watching.
    πŸ™‚
    That surgery must have been so terrifying for you. What would we do without those specialized hospitals?
    Looking forward to reading more throughout the month.

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  33. First, he was a cute baby. That had to have been rough. I guess we’ll see more as we go along. Great start to the challenge.

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  34. Such a sweet, special child. You know there is a reason he is in your life. Thank you for sharing him with us.

    Mary
    Twitter: @KnottyMarie
    Literary Gold
    Jingle Jangle Jungle

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  35. I’m looking forward to following your journey. I’ve read a bit off and on, but look forward to the whole.

    Finding Eliza

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  36. I look forward to this series and to, hopefully, understanding these challenges (for you and Alex) a little better.

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  37. He looks so precious in the video. I am a mother and I can imagine some of what it was like to hear about the problems before Alex was born, have him go through major surgery, and then find out he is deaf. It is an important story and you are courageous.

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  38. I love that I will learn a lot more about the joys and struggles you have gone through thanks to the challenge. I have said it before…but I will say it again. You are a strong woman.

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  39. Reading this gave me chills. I can’t imagine going through all that you have. But through it all, you have continued to do what is best for him. Alex is so fortunate to have you.

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  40. Oh my gosh Linda! I just started following you recently so I don’t know if you’ve opened up about this before. I can’t imagine what you must have gone through! What a terrifying experience. What an adorable baby he was! Those cheeks oh my goodness!! I’m sure that you have learned many things having him in your life. I look forward to learning more about you and your precious Alex πŸ™‚

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