About Justin Dunn

Who Am I?

Justin Dunn

Date of Birth

April 2, 2000

Where I Live

Bryan, Texas (2 hrs from Houston, TX), we use Texas Children's Hospital in Houston

My E-mail Address

sharby@tconline.net

My Family

Parents: Sharon and Toby Dunn, and younger sibling edd 12/13/04

When My Defect Was Diagnosed

After birth

Basic Diagnosis

"near" pulmonary atresia w/IVS, hypoplastic right ventricle, PDA, PFO, tricuspid stenosis and regurgitation, mildly hypoplastic left ventricle

My Cardiologist

Ronald Grifka, director of the cardiac clinic at Texas Children's Hospital in Houston, Texas (former director of the catheterization lab at Texas Children's)

Surgeries to Date

April 4, 2000: balloon valvotomy and atrial septostomy

Amazingly, when they opened the valve and created a larger ASD, Justin's right vent. responded and grew, and he even maintained O2 in the high 70s before leaving the hospital at 10 days old, so they did not do the anticipated BT shunt. Over the next year, his sats continued to improve to the low 90s.

Upcoming Surgeries

Upcoming: We have NO idea!! Justin is doing TONS better than anyone expected with his 2-vent. fix. He has moderate pulmonary valve insufficiency, so we expect at some point that he will need a valve replacement. Also, depending on the size of the ASD at his next echo, he may need that closed by cath in the next couple of years. Any procedures would be done at Texas Children's by Dr. Grifka in the cath lab, or by surgeons Dr. Fraser or Dr. McKenzie.

Description of Our Hospital

They have changed everything since we were there, adding a CICU and a step-down unit (but I'm not positive that it is cardiac only). All the cardiac testing and offices of the Heart Center have been combined on 4 floors together, and it is all incredibly convenient compared to 4 years ago. There is a Ronald McDonald House inside the hospital that you sign up for each day, and another RMH just down the street where you can stay up to 45 days at a time, with a 1 week (or maybe 10 days) break in between.

The hospital does not get involved in any support groups, however, there is a yahoo group (http://health.groups.yahoo.com/group/CHD_families_of_TxChildrens/) for parents of heart kids at Texas Children's that is very inactive, but important info is posted there (such as about the Fall Party for the heart kids and any events). There is a heart parent rep on the planning committee for Texas Children's, Pam Barnes, who is on that yahoo list and can tell you what is available and planned, as well as take input to present to the planning committee.

My Mom's CHD Involvement

The first year I did not have any support system, and I spent time alone at home feeling that I had to do SOMETHING, so I made baby quilts to give to other babies who have similar diagnosis to Justin's. I sent them to our cardiologist, and he was so thrilled that he had one framed and put on the wall on the cardiac offices floor for all of the staff to enjoy, and has since been personally selecting families to give the other quilts to.

Since then I have made a few quilts that I delivered in person, but I have a very hard time learning of parents to meet at the hospital.

I keep up with the Heartcenteronline discussion board on Congenital and Pediatric Heart Disease and the Hypoplastic_Right Yahoo Group.

I have written a song from the perspective of “heart parents” based on what I have felt and have heard others express on these support groups.

In the future I hope to make more quilts and possibly pillows and contact the AHA office on the Heart Center floor of Texas Children's, since they have given Justin a couple of heart pillows.

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