We have been reading your stories for a little while now and have now have plucked up the courage to introduce our amazing little soldier. Harry McKerral Smith was born in April 2010, we had no idea of any problems until the day he was born. He was born at full term at a weight of 6lb 1oz. He had a right fixed talapeze, dimples on the base of his spine, a skin tag on his left ear and a Tongue tie. He was also a very slow feeder.
Over the next few weeks a lot more was to come to light. He was found to be severely deaf and has a hole in his heart (VSD). There was also a large question over his vision.
When Harry was diagnosed with his heart condition they told us he was in heart failure, which was the lowest point for us. It was only then that one paediatrician decided to do genetic testing. Within two weeks we were given the diagnosis that our little soldier had WHS.
We were torn between being relieved that we finally had an answer and the reality of the challenges ahead. Like so many of the experiences we have read, we were passed an Internet printout describing WHS and our paediatrician and geneticist openly admit to having to google the syndrome. At times we feel we know more than them.
Harry had his first seizure at 5 months old and took 1hr 45 mins to stop. Since then he has had many minor seizures,sometimes two or three a day. He had a massive one a few weeks ago which they could only stop by sedating and paralising him after two hours. He ended up in ICU for a couple of days on a ventilator but came out fighting. As a result he has been started on anti seizure meds and is responding well.
Now on to the positive. Harry is 11 months old approaching his first birthday which we thought on so many occasions we would never see. His eye sight has improved immensely and he is finally feeding really well. He can hold his head up but not ready to sit up. His heart is mending itself and the hole is almost closed. His cardiologist now thinks he is boring ha ha! He has the cutest baby blue hearing aids which he shouts until you put them in. He has the most amazing little smile and is so contented. His big brother adores him and Harry is constantly watching him.
We would never be without Harry as he has completed our family and brought us all closer together more than we could ever imagine. On the bad days he picks us up with his gorgeous big smile and let’s us know that everything is ok in Harry’s world. We are so pleased that we have found this site as we now feel that we are not alone. We believe that these children were sent as gifts to good families that can guide and support them through their special lives. We have to cherish every moment and not focus on the sydrome.
We try to treat Harry as a normal child who just happens to like hospitals. All in all he is our little fighter and we believe he will be with us for a long time to come.
We welcome anyone who wishes to contact us and would love to get in touch with other families like us.
Take care and god bless.
John, Carol-Anne, Sam & Harry
If you enjoyed this article, please consider sharing it!
Yes you are a wonderful family bonding together when the times are tough and Harry has given his wider family a sense of awareness of what we all mean to each other. He is a very special little boy – a real gift from God.
God Bless you Carol-Anne, John, big brother Sam and Harry.
xxxx
He is so beautiful. You are truly blessed. Love him dearly.
Hello Harry! You are so cute. Thanks Carol-Anne for sharing your story with us. You are so right when you said our children are gifts. I can’t imagine my life without Taylor.
Harry is such a handsome little man! Thank you for sharing your story. Our story started out very similar. I am excited to be following your journey. You are so right when you said our children are gifts. Dylan is a gift to our family and I couldn’t imagine our family without him. Take care.
🙂 Kristy
http://www.ourlittledillpickle.blogspot.com
Harry is gorgeous! I love the picture. I enjoyed reading your story and am excited to follow his progress through this site. Our little girl just turned 2. She is our hero as well.
Hello my name is Vanessa i am a sophomore at a high school in Nevada; and me and my partner are doing a biology project on Karoytype. We have have done much research on this syndrome. & we would be more than glad to learn more. its nice to hear that baby Harry is doing well , he is a very cute baby boy by the way(:. We would like to know things like how are his uasual days , if he gets any type of therapy.& if he is greatly going to overcome his struggles. & yes your baby still has a great life ahead of him.
Hi Carol-Anne, it does take a bit of courage to put something up, thanks for sharing! Your story is so similar to ours, our daughter Eve was born in March 2010, she has just turned 1! Harry is a spunky little man! Look forward to keeping up with his progress.
Breanna – Mum to Eve (1 year…yay)
Hello. Harry is adorable! I love the line,”Harry as a normal child who just happens to like hospitals.”
Our daughter, Magnolia, is just over 5 months old. I’m looking forward to getting to know Harry and your family.
~Hilary
http://iwontweargrey.blogspot.com/
I really like this website, your story about Harry is my second to read & I truly thank you for sharing he’s absolutly gorgious. I celebrated my daughter’s 8th birthday the end of February, that day as I got her ready for school I thought of the day we celebrated her 1st birthday. She was only 12 lbs and was in & out of the hospital. I’m looking forward sharing our story soon.
What a handsome little guy 🙂 Sounds like he’s doing so well, awesome that the VSD is closing by itself! Harry would get along very well with my princess Sabrina because she loves hospitals too! I look forward to hearing all Harrys wonderful progress to come.
OH my goodness, Harry is so cute!!! 🙂 Emma (who’s 4) also has a skin tag by her left ear. I look forward to hearing more about his progress as well!
What a beautiful baby. I have a 5 year old and have spent lots of time in the hospital with her but when she is out and doing good it makes my heart sing as I’m sure your Harry makes your heart sing.
Thanks for sharing your story, Carol-Anne. Harry sounds like quite the wee trooper, it’s great to hear he is doing so well – and what a lovely photo! Our little Mia is only 9 weeks old, but we are looking forward to the day when we see her smile like Harry.
I love your notion that ‘these children were sent as gifts’; that is exactly how we feel. It’s hard to explain to other people how something which, on the face of it, seems like a negative can make you feel ‘lucky’ – but you have summed it up perfectly in that sentiment. Thank you!
What a beautiful baby boy!! Welcome, Harry, to our family~ you are already loved! xo
You are very right, our baby’s are special gifts. We don’t know what life will hand us or how we’ll make it through most of the time, but we do. Your baby is soooooo cute!