Saturday, June 29, 2013

Featured CDHer~ Tracey



My name is Tracey and I am a cdh survivor. I am 33 years old. Back in 1980 I was born with a left sided cdh. I wasn't breathing so I was life flighted to another hospital. I went through 12 hours of surgery and given a 40 percent chance to live. I was given my last rights several times and they had to bring me back once also. I had a breathing tube put in my left side because my lung collapsed. I was put on oxygen and stayed in the nicu for 4 months. When I came home I was still on a feeding tube until 6 months. I managed to live a pretty normal life. I have had 3 healthy children and 8 surgeries to correct problems from my anatomy being a mess with my most recent open abdominal surgery to remove my appendix which was attached to  my spleen. Also my doctor removed a lot of adhesions and tried to rearranged my malrotated intestines. All of my large bowel and colon was  on my left side and all my small bowel was on my right side. I also have a kidney that is upside down. My liver is in the center and looks like I have two of them. Everything works correctly so I guess I can't complain. I keep on going and take one day at a time. To all of you who were born with cdh never give up. I have made it this far fighting and so can you!



Kathy Taborelli said...

Tracy thank you for your amazing story. My daughter Sydney was born with RCDH years ago. She was in the NICCU 224 and she too has the liver in the middle of her abs. I am always worried for the future since the Docs. keep telling me that "5 years ago a baby with Syds. severity did not survive". You have given me hope that she will lead a "normal" life.

Raelyn said...

Hi, my name is Raelyn, and I, too, am a CDH survivor from the 1980's. I'm actually pushin' 30 right now, and think that is pretty neat!! Seriously!! Although my CDH experience was not nearly as memorable as yours sounds--children born with this birth defect are as unique as a zebra's stripe pattern--my lung did collapse. Wait. What?! They did not sever your appendix during the CDH repair operation?! Interesting. My doctor took mine. I just assumed that was what they did!! You are, as my phrase goes, Beautifully Unique. I am glad that you're a survivor, an adult Kindred Spirit CDH Friend!! You. Are. An. Inspiration. ;)

Ali Montgomery said...

Thank you so much for sharing you story! It also gives me hope for my little CDH survivor!

incarcerated herni said...

I Do have this Incarcerated Hernia but its dangerous/

Andrea Burkhart said...

my son's appendix was not removed during his repair either. ..he's 16.

Andrea Burkhart said...

It's nice to know your children were not born with CDH either. I know it's called a congenital defect, however, there are so few CDH survivors that are of reproductive age to definitively know if the defect can transfer their children.

Andrea Burkhart said...

my son's appendix was not removed during his repair either. ..he's 16.

Sarah Smith said...

Hi, my name is Sarah. My daughter, Elizabeth, was born in 1987 near Norfolk, Virginia, and was diagnosed with a left side CHD within a few hours of her birth. At that time, CDH was a death sentence. There had been no success stories. It was terrifying...the medical community gave us little hope, and had no idea what to expect if she survived. But survive, she did!

There were no support groups, websites, or even social workers to help guide us through, not just the initial NICU stay, but, later, as she was growing up. She has always had GI issues, and no one considered that they might be related. Over-eating has always caused her scar to hurt...Because, back then, there were so few survivors, we didn't know what to expect, so we only thought about her lungs.

We were told all the things she would never do -climb Mt. Everest, or be a long distance runner.... Well, they forgot to tell Elizabeth that! She played field hockey and lacross (yes, at times she did get a little blue around the lips..."use your inhaler!"). She became a cheer leader, a John's Hopkins Scholar, a class officer. A normal and healthy child in every way.

We moved to Colorado when she was 15. She started climbing mountains. She has climbed several "14ers" (mountains taller than 14,000 ft.) She became an accomplished equestrian, riding in the A Circuit, showing and winning in the Hunter ring. She went on to ride at Auburn University, where their NCAA Div I equestrian team won the national title. Yes, she is a National Champion athlete!

She's a little thing, 5'2' (with her shoes on). But like so many of these miracle babies, she's feisty!

I just got off the phone with her. She is now 29, married, and 10 weeks pregnant with her first baby. It was good to see another survivor from about the same time that Elizabeth was born has had a successful pregnancy! Her scar is uncomfortable, but she is scheduled to see a High-Risk OB in 2 weeks, where they will also consult with a gastroenterologist.

To all the other parents out there - I have since met 5 other mothers whose babies didn't have a good outcome. This will be the first time that I have been able to communicate with others that have been through this. I wish there had been an internet 3 decades ago, it would have been so helpful.

If there is anything that I can do to help those of you that are raising children with CDH, please don't hesitate to contact me. I would never wish this experience on anyone, but I have learned so much, and appreciate the miracle of motherhood in a way that so few get to.

We did go on to have another baby, and he was born without complications. We have lived our lives like any other parents, going forward every day. We did out best to not let Elizabeth be known as "the baby with the birth-defect". She is proud of her scar, she wears a bikini to the beach.

I am not sure she will ever fully comprehend how much of a miracle she is, but that's ok. We do.

Congratulations on your baby! Enjoy!