In a previous post
, I mentioned how I covered a reunion of Neonatal ICU children.
This was truly an eye-opening experience for me as well as a moment of inspiration.
I met so many kids that day who had lived through unbeatable odds, or through incredibly difficult conditions and situations. It was really like standing in a room full of walking miracles. Some of the kids were probably barely out of the ICU while some were well on their way to having a normal childhood by now.
After editing some of the images from that day, I came upon the idea to do a personal project on some of the kids who have been through the NICU. The goal was to find out the story behind these kids and to take their photograph. Last week my idea became reality as I had my first shoot for the project. Now I was planning on saving these images until I had shot a few more, but the more I look at the images and the more I think about the story behind it - I just can't wait any longer. I know it is a lot to read but I want to share it with you.
I would like for you to meet Ryan Holliday.
Ryan is 2 years old. His parents noticed something different about him when he was born. His father thought his head was shaped a little differently than normal. They thought it may have just been their imagination but their fears were confirmed. They discovered something was wrong with him when he turned blue while the nurses were giving him his first bath.
They soon found out that Ryan had been born with Pfeiffer Syndrome
. This is a genetic mutation which results in a fusion of the skull bones. This meant that Ryan would have to undergo surgery to open up his skull, allowing his brain to grow. This is a pretty rare mutation, occurring in only one out of every 100,000 children born.
Fortunately one of the nation's top specialists for this surgery is located here in Dallas and Ryan was able to get the surgery he needed and be on his way home after just a few days.
When Ryan was about 15 months old the tiny bones in his nose were so squished together that his nose quit functioning and he was forced to get a tracheostomy tube to help him with breathing normally.
Fast forward to today and Ryan has had 7 surgeries already. Every 6 months he has to go back to the hospital for an MRI of his skull. If it reveals that the brain needs more room he has to stay and get his skull cut open, an 8-10 hour surgery. This will continue until he is 18 years old and the brain stops growing.
When he is 5 or 6 years old he will go in for a midface surgery. The goals of this surgery are to move the midface out more helping him with breathing; to move the jaws out to help chew; to alleviate any teeth crowding; and to help his speech. After he has had his first midface surgery his nose should be open enough to support the consumption of oxygen and he can have the tracheostomy tube removed. When he is 14 or 15 he will have another midface surgery. After this second midface surgery his eyes should look more normal as well.
For every surgery Ryan has, it sets him about one month behind the development of other children his age. As you can imagine, after having 7 surgeries in 22 months Ryan is a little behind on the average toddler. However his parents have taught him to sign a few things so that he can communicate with them. He is also starting to say his first words which is a huge encouragement.
His parents have tapped into the amazing resources provided by the internet and have met other parents with children who have pfeiffer's as well as children who are dealing with this syndrome. One of which was a 19-year old college student. There is every reason to believe that Ryan will develop into a handsom young man with normal intelligence and normal life expentancy. All of this has helped to encourage the family quite a bit in their journey.
Despite the difficulties that he faces and the challenges that come with Pfeiffer's syndrome, his mother remains very optimistic. Ryan is as playful and full of life as any kid I have been around in my life, which is amazing when you think about all he has had to go through.
These photographs do two things to me every time I see them. First and foremost they make me want to go over to Ryan's house and give him a huge hug.
The second thing they do is challenge me to not take the little things for granted in life.
Thank you Ryan
Labels: dallas, neonatal, nicu, pfeiffer's syndrome, photographer, photography, portrait