Chesterton girl survives congenital diaphragmatic hernia

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BY ANNETTE ARNOLD
aarnold@nwitimes.com
219.548.4359 | Tuesday, April 01, 2008 | (13 comment(s))

CHESTERTON | Jaslyn Parker will turn 2 in August and appears to be a typical kid. She loves to play with her siblings and she is getting a head start on her Terrible 2s.

But that's OK with her parents, Tiffany and Jason Parker, of Chesterton, because Jaslyn was born with a congenital diaphragmatic hernia, a sometimes fatal condition, in which the muscle between the abdomen and chest has a hole or is missing.

When she was born, Jaslyn's liver, spleen and stomach and large intestines were in her chest, compromising her lungs.

Jaslyn was given a 10 percent chance of survival.

Although she still has some problems, including weight gain and seizures, they feel lucky to have her.

"We were told to plan a funeral," said Tiffany. "We want parents to know where they can get help because it can all be very confusing especially if you bring home a child with feeding tubes or he is on oxygen."

Tiffany has found online support and has talked with others whose children have CD. She joined breathofhopeinc.com and has met parents from all over the world with children who have and have not survived.

"The group just launched a huge campaign and sent out proclamation letters and more than 30 governors signed it proclaiming March 31 as National CD Day," said Tiffany. "We are just trying to get the word out and we want people to be aware of this condition."

Tiffany said she is often amazed when she looks at her daughter.

"I look at her and her brain is there and she is coping better and I think 'wow' and then there are times I wonder when she will be back in the hospital," said Tiffany.

When Jaslyn turned 1 last year, the Parkers celebrated with a blood drive and 50 people showed up. They want to do it again this year and want to double that amount.

Tiffany hopes other parents whose children are suffering from this will check out the Web site and they can also check out Jaslyn's Web site, carepages.com, and type in Jaslyn Parker and the public can read her story.

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anna patrick wrote on Nov 19, 2008 12:36 PM:

" your daughter is lovely thank god she is doing well. our baby daughter is due dec 24th, last week we were told she has a diaphragmatic hernia. we got a fetal echo last friday and her heart looks perfect, i got a amnio yesterday, will not have results for ten days & i am getting a mri tomorrow. the hospital we are attending now has a ecmo unit and they have experience with diaphragmatic hernias. can you tell me if her chances are better now they know befor her birth. thanks so much "

Proud mommy :) wrote on Apr 3, 2008 10:48 AM:

" Michelle-Thank you for your comment. It means so much to us to know that we are doing a good job of spreading awareness!!! We love hearing from Jaslyn's followers! I'm so glad that even 2 days after this article was printed her story is still being commented. I'm all teary eyed again.

Tiff "

Michelle Roe wrote on Apr 2, 2008 10:33 PM:

" Jaslyn is truly a miracle baby. She looks so precious. Tiff & Jason are very special parents. Tiff has been keeping us posted since Jaslyn was born by constantly updating the CarePages. Thank you for being the voice of the children when it comes to CDH. You are reaching many people in ways you'll never know. I've enjoyed reading this article & the comments from other readers & even the survivors.
God Bless everyone.
"

Dotty wrote on Apr 2, 2008 9:48 AM:

" Wonderful Article! what an amazing beauty she is!!
keep on fighting!
Dotty
mom to Zach lcdh, 10-26-07 "

Proud mommy :) wrote on Apr 2, 2008 7:42 AM:

" CDH survivor.......Jaslyn is doing pretty well. But she still has many medical problems including a severe seizure disorder from what they did to save her life. No 2 CDH babies are alike and the fatality rate is 50% of the ones born alive! CDH is very unpredictable. I would love to learn more about your journey. Please join Jaslyn's carepage and leave a comment so when can respond back!! We'd be very interested in hearing your story.

Tiff-Jaslyn's mommy :) "

Jonathan's Mommy wrote on Apr 1, 2008 7:17 PM:

" Tiff you have done a great job getting the word out for CDH Thank you for doing that All of our earthly angels and Heavenly Angels deserve to be recognized for there battles that they have fought!!!! Thank you for getting the word out for all of our babies!!! You all are in my prayers!!!!
Love ya
Beverly
Lil Jonathan's Mommy 10-02-00 - 11-07-00 "

CDH Survivor wrote on Apr 1, 2008 2:22 PM:

" I was diagnosed with this disorder in January of 1972 at 3 days old. My parents had made funeral arangements on the Dr.s advice. Obviously I survived, and beat the odds especially considering technology back then.

I have been able to live a 'normal' life with no physical problems related to CDH. I also would assume with today's technology, the young girl in this story will be able to do the same! Good luck and God Bless. "

Heidi wrote on Apr 1, 2008 12:48 PM:

" Tiffany, What a great story! Jaslyn is such a miracle girl! I wish we lived closer so Julia and Jaslyn could play! You're awesome for getting all this CDH awareness out in the public! Hugs, Heidi "

Proud mommy :) wrote on Apr 1, 2008 12:38 PM:

" Delores, Thank you so much for sharing your story. We would love to hear more about your journey with CDH and Micah. Also I know a whole group of parents of CDH kids who would love to hear his inspirational story as well :) I have no way to contact you but please feel free to get on Jaslyn's carepage (the info is in the article) and leave us a comment so I can contact you back. Also I can be emailed through her site also. Thank you again for sharing. It means so much.

Tiff "

Proud mommy :) wrote on Apr 1, 2008 11:56 AM:

" just a mom......Thank you for taking the time to read about my Jaslyn. You are right she is very special. I'm sorry to hear about your son. I'm sure he was amazing also. Special kids are truely a gift from above!

Tiff and Jaslyn "

Delores Nelson wrote on Apr 1, 2008 11:20 AM:

" Tiffany & Jason, If you ever need an understanding ear, I'm it. Our son, Micah, was born with bilateral CDH in 1980. His surgery was completely experimental in many ways and his case was not diagnosed for 8 months... At 8 months he weighed 8 pounds (he was 6 lb, 15 oz. at birth.) His chance of survival was like Jaslyn. I want you to know that Micah is the most amazing young man in the world and he will be 28 this year. He leads a completely normal life and has conquered unbelievable odds. Not bad for someone who wasn't supposed to live at all. Please feel free to contact me if you ever need someone to talk to. I only wish that there had been a support group like this available all those years ago. We still thank God every day for Micah. He was our miracle baby just as Jaslyn is yours. My heart goes out to you and my prayers as well. Delores "

Just a Mom wrote on Apr 1, 2008 10:21 AM:

" I read your story this morning and immediately went to your care page and read all of the updates. I cried, I laughed and I had chills. Your belief that you are blessed with a special child is incredibly heart warming. I lost a child 10 years ago to Cancer and not a day goes by that I don't remember him and his fight. God bless all of you in this journey and Jaslyn will be in my prayers. "

Proud mommy :) wrote on Apr 1, 2008 7:52 AM:

" Great story. This is about my daughter. We did it to raise awareness for CDH (congenital diaphragmatic hernia). If you read it please check out the links listed. This birth defect is actually quite common. More common than Spina Bifida and Cystic Fibrosis. Yet many of you probably haven't heard of CDH. The fatality rate is approximately 50%. We want other families to know that they are not alone and there is help out there if you are diagnosed!!!!
Tiff "

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