Monday, August 11, 2014

Using Crisis to Create: The Asher James Foundation

 
In June, Sisters by Heart President, Stacey Lihn, presented at the Mended Little Hearts' National CHD Symposium.  Following, she was able to meet and talk with HLHS parents across the country.  Jen DeBouver is one of many parents that inspired Stacey, and we've asked Jen to share her journey and advocacy efforts - to educate parents on the risks of blood clots in our CHD community and how you might be able to help.
The Asher James Foundation
by Jennifer DeBouver

 

 

When I was pregnant with my son, my second child, I thought nothing could go wrong – not this time. I had just lost my daughter Olivia at 27 weeks. She no longer had a heartbeat the doctor told us. When it came around 26 weeks of pregnancy with Asher, I was a nervous wreck. My husband and I were at a 26 week check-up when the ultrasound tech left to get the doctor. I couldn’t believe something was happening again around the same time as Olivia. When the doctor returned, he told us that he wanted us to get a second opinion on Asher’s heart because he saw something but wanted to make sure.

We had an echo done and found out that Asher had Aortic Stenosis. The doctor gave us two options – wait until he was born in which his heart defect would develop into HLHS or have a fetal intervention. As a parent we wanted to do the best possible thing for our baby so we decided to do the fetal intervention. A week later we flew from Chicago to Houston to have the fetal intervention.

When we got to Texas Children’s, it was a full day of testing to see if we were a candidate for the fetal intervention. This is when we learned that in a week, Asher’s heart had gotten worse. He had developed coarctation of the arch and had leaks in his mitral and tricuspid valve. The cardiologist started crying and told us that our baby had no idea that he was sick. We met with the entire team and one of the doctors told us that without the fetal intervention, Asher wouldn’t make it to birth and that it was a Hail Mary that he would make it through the procedure. Asher was born on September 10, 2012, at 36 weeks – 9 weeks after the fetal intervention. After we had a very successful fetal intervention, we started calling Asher our little Fighter. Hours after being born, he had to have a cath procedure to re-inflate the balloon that was inserted during the fetal intervention. At 11 days old, he underwent his first surgery to fix his aortic arch.
 

Asher rocked every procedure and was doing amazing. But at 4 weeks old all that changed. One day Asher looked amazing and then the next he started looking red and puffy and continued getting puffier from there. After 2 days of being swollen, we found out that blood clots had developed in his jugular veins and arms, restricting blood flow from his head to his heart. The hematologist tried different medications on him, some seemed to work and some didn’t. She told us that they were using scaled down adult medications because there aren’t any medications designed for children. She also told us that there weren’t any foundations supporting blood clots in children.

 

Asher lived for 6 weeks before he lost his battle to these blood clots on October 23, 2012. After everything that his hematologist told us, I knew that I wanted to continue Asher’s fight by starting a foundation in his memory for children’s blood clots. So a few months later, my husband and I started the Asher James Congenital Heart Disease & Thrombosis Foundation. We wanted to let others know that their children were at risk for clots when hospitalized because we had no idea this could happen until it happened to us.

This year we held our first Children’s Blood Clot Awareness Day at Ann & Robert H. Lurie Children’s Hospital of Chicago to inform families and staff of blood clot awareness. We spoke on Capitol Hill to both Congress and the Senate on children’s blood clots and shared Asher’s story.
 

In the Fall, we are holding our first blood clot awareness walk. We know that Asher is still with us and is making a difference in children’s lives and we continue his fight through awareness, and one day, research in children’s blood clots. Find out more about our foundation at www.asherjamesfoundation.org.

Thank you, Jennifer, for sharing Asher's story and your courageous fight to raise awareness and answers for both the CHD community and all children at risk for thrombosis.  Feel free to "like" the Asher James Foundation on Facebook at https://www.facebook.com/asherjamesfoundation and show Jen your support by commenting on the Foundation's page and/or sharing your story about how thrombosis/blood clots affected your CHD journey. 

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Previous Blog Posts

Tuesday April 21st, 2017: Parent Scholarships NPC-QIC 2017

Monday, August 8, 2016: On Finding His Tribe

Thursday, November 19, 2015: You're the General Manager

Monday, July 20, 2015: Fontan Care Package Launch

Monday, June 8, 2015: SBH Supports Full Transparency in Outcomes Data

Wednesday, May 6, 2015: New Care Package Items

Wednesday, April 29, 2015: A Tea Just for You: Heart Mom Comfort Tea!

Monday, March 2, 2015: Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Tuesday, February 17, 2015: NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

Monday, February 2, 2015: Fundraising with Heart: Tink & Key

Thursday, January 29, 2015: January 2015 NPC-QIC Action Period Call Update

Wednesday, January 28, 2015: Fundraising with Heart: The Baby Blue Sound Collective

Thursday, December 18, 2014: Sharing HOPE: An exciting opportunity

Tuesday, September 30, 2014: HLHS Collaborative: September's Action Period Call

Tuesday, August 26, 2014: Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Monday, August 18, 2014: CHD Kids and School Special Services

Monday, August 11, 2014: Using Crisis to Create: The Asher James Foundation

Wednesday, July 2, 2014: HLHS Collaborative: June's Action Period Call

Monday, June 23, 2014: Pink for Paul!

Friday, June 13, 2014: Why There are No "Brothers by Heart"

Tuesday, May 13, 2014: What If...

Wednesday, April 2, 2014: HLHS Collaborative: March's Action Period Call

Wednesday, March 5, 2014: HLHS Collaborative: February's Action Period Call

Saturday, February 15, 2014: Shopping for a Cause

Thursday, February 6, 2014: HLHS Collaborative: January's Action Period Call

Friday, January 17, 2014: Research Opportunity: Prenatally Diagnosed Moms Need Apply!

Monday, January 6, 2014: HLHS Collaborative: December's Action Call

Friday, December 27, 2013: Dual Perspectives: Growing Up with HLHS

Wednesday, December 4, 2013: Take Action: Be Part of the Solution

Tuesday, December 3, 2013: Join Millions for #GivingTuesday

Monday, November 18, 2013: A Mother's Perspective: The Other Sibling

Wednesday, November 6, 2013: A Unique Opportunity with What to Expect

Tuesday, November 5, 2013: Time to Vote!

Friday, November 1, 2013: 2nd Annual Sisters by Heart Avon Fundraiser

Thursday, September 12, 2013: Possibilities: Cord Blood Banking

Tuesday, September 3, 2013: A Unique Partnership

Tuesday, August 6, 2013: Fontan Series: Kylan's Story

Monday, July 22, 2013: Fontan Series: Lily's Story

Monday, July 15, 2013: Fontan Series: Aly's Story

Monday, May 13, 2013: A Heartfelt Donation: Medical Masks in Anya's Memory

Monday, April 22, 2013: Parent's Perspective: What to Pack for the Hospital

Thursday, April 18, 2013: Getting a 2nd Opinion: An Inpatient Perspective

Monday, April 15, 2013: Getting a 2nd Opinion: An Outpatient Perspective

Saturday, February 9, 2013: It's February, Celebrate Black History Month!

Monday, February 4, 2013: A Heartfelt Donation: eBay Foundation

Friday, February 1, 2013: A Unique Collaboration: SBH and the NPC-QIC

Monday, January 28, 2013: NPC-QIC Winter Learning Session

Friday, December 21, 2012: A Mothers Perspective: Feeding issues

Wednesday, December 5, 2012: A Heartfelt Donation: Smart Mom Jewelry

Sunday, November 18, 2012: Heartfelt Donations: aden + anais and The Dorsett Family

Tuesday, November 13, 2012: Gifts from the Heart: Stella & Dot

Monday, November 5, 2012: Creative Donors: United Way Workplace Campaigns

Sunday, November 4, 2012: A Mother's Perspective: Healing a Hurting Marriage

Sunday, October 28, 2013: A Heartfelt Donation: Avon

Saturday, October 27, 2012: A Gift for Our Fighters

Monday, October 15, 2012: Stories of Hope: Tyler Sajdak

Monday, October 8, 2012: A Heartfelt Donation: The Mended Heart

Monday, September 24, 2012: Fun in the Sun: Year Two

Sunday, September 16, 2012: Creative Moms: Warrior Scrapbooking

September 11th, 2012: Remembering Our Heroes

June 6th, 2012: Top Ten Discharge List