The Clyde Family

The Clyde Family

Friday, January 7, 2011

Life changing news for the Clyde family

So, about 9 1/2 years ago, our baby was diagnosed with a birth defect called Congenital Diaphragmatic Hernia (CDH). We didn't know much about it until our Perinatologist referred us to CHERUBS, a support group for families dealing with CDH. Well, to make a long story short, when we had Tyler, our odds were that he (if born alive) would have a 50% chance of survival including 4-6 months in the NICU (in a children's hospital 300 miles from home) and have a lifetime of health problems. The only answers we were given as to why this happened was, "if the mother took a bath in pesticides in the 8th week of gestation, that might increase the odds of your baby being born with this birth defect". WOW!!!!! I knew we would eventually find out more.
Tyler right after his surgery on day 5 to put a patch on his diaphragm
to make it complete, keeping his guts out of his chest cavity.
He was a VERY sick baby. Very, very sick.



As you know, this Clyde family doesn't do anything the way we are supposed to. We suffered through some REALLY hard times. Really hard. But Tyler has a determined personality and never gives up, right from the minute he was born. His defect was quite severe, but he defied all the odds and came home on day 28 on only oxygen and reflux meds!!! He has no major health problems that are connected to CDH and he is talked about as "Miracle Tyler". We get comfortable with him being a healthy kid and sometimes he gets sick and we realize how he is not "normal". We live with the fear that the patch that the doctors put in him at birth and then modified at 4 months, could come loose and he could die. Yea, it scares the crap out of us, but he's been doing great.
This is Tyler at 4 months before his second repair.
That is pain you see in his eyes. Absolute and unbearable pain.



Over the years, we have done genetic counseling, blood work, questionnaires, and other things to help find the reason that kids are born with CDH. It's a slow process. A couple months ago, I got a letter from the University of Utah about participating in more research, of course, we agreed. Last night I got the call from a doctor in Salt Lake City. He gave us news that could change our lives and lives of future generations.

He informed me that Tyler has some very distant relatives living in Utah that also have CDH. There has never been any genetic link proven, but this newest research has found a possible link between us and them and the doctors and dying to get their hands on our blood. To tell you how distantly we are related, you would have to go back 6 generations from Tyler to even see where we are related. He wouldn't tell me if it's my side or Randy's side of the family, he knows, but couldn't tell me yet.

This is life changing. Because of our participation in past research and that other family's participation, we could possibly be changing the future course for CDH. I can't tell you how happy I am!!!! This is the kind of news we have waited for, for almost 10 years and others for so much longer!!!!

The doctor will send us containers to do our blood work. Randy's uncle Fred will do the draws for us like he has in the past and we will ship it back up to SLC. This doctor was so excited to tell us the news and I have been on cloud 9 since the phone call!!!!

He told us an easy way to explain it to people, it's like Tyler is a book, a big novel. In all his pages, there are 2 sentences that have grammar errors. In the blood work, he will try to find those 2 sentences and link them to the other distant family member's 2 sentences!!! It's so specialized and exact that it makes my head hurt to think of what they are trying to do.

After the phone call with the doctor, we talked to Tyler about it all and it was cool to get to explain my beliefs on this. I believe that Tyler lived so that he could participate in research to help find a cause and cure for CDH. I have always felt that. Medically speaking, he should not be alive, so we are truly blessed and I feel it's our obligation to do this. Tyler understands and agrees. I'm so proud to be his mom. It's not been easy, but I know he is a chosen spirit put on Earth to do good things.

Anyhow, that was long enough, but it's just amazing news and our family is so happy!!!!!

If you want to take a minute and watch THIS VIDEO I made to document his journey with CDH, I thank you. Awareness is a big part of getting things to happen!!!! Have a good day, everyone. I know I will!!!!

11 comments:

Amy said...

That is AMAZING!!! It's so cool that you guys are changing the future for everyone. I hope and pray that this research will find the answers that they are looking for and they can find a cure!!!

Megan said...

WOW!!! That is so cool!

Melanie Hensley said...

So amazing. Thanks for doing the research. It gives us hope too. So it can be genetic. Josh's dad's first's wife's brother had a daughter with CDH. No blood relation at all. That is all way have found out. This is excellent news. Thanks Hope.

Aleisha said...

Yeah~ What wonderful news!! I am so happy for you!! I hope you are feeling good today! :)

Wendy said...

Hopie, that's awesome!!!! Tyler's a great kid! Love you guys!

Our ABC Family said...

Wow!!! That is amazing, seriously! Just from hearing his story, and following your thoughts and feelings, I've always felt like the Lord has something major in store for him and your family. This right here is a small smidgen of that proof! What a fighter you have, and be sure to keep us posted with how it all turns out! Love you guys!

Jeremy Reynolds Family said...

That is completely awesome!! Good Luck with all the testing. And good luck to all the doctors too!

Laura said...

Very cool- but I always knew you were going to change the world anyway!

Lindsay said...

awesome awesome!

akclyde family said...

WAY COOL! :)

Erin said...

That is AMAZING! Truly inspiring. I agree - this special little boy lived for a reason (aside from making his mommy happy every day). :) Congrats Hopie! That really is so incredible.

Those baby pics make my heart ache. :(