“My son Zane Hefley was born with an atrial septal heart defect that was repaired successfully when he was 17 months old. At the time of his surgery, I felt like I gave the son God had given me, back to him, and he returned him to me whole and healthy. He is now the father of 2-year-old Harley Isabella Hefley who has Scimitar Syndrome. At this time, she is just being monitored by a pediatric cardiologist and is doing well. My prayer request is that she continues to do so.”

Caryl, I pray that Zane will enjoy the same blessing that you have experienced — may he watch his child overcome a congenital heart defect and perhaps become a parent herself one day.

Lord! I trust Your word and turn to You for help. My son, Victor Alfonso D. Sta.Maria, will undergo an open heart surgery on Dec.12,2011. He was diagnosed with a congenital heart defect called Tricuspid Valve Atresia with Ventricular Septal Defect, Pulmonary Stenosis and Patent Ductus Arteriosus. Please pray for Victor and for my family through this process as well.

Prayers for a successful surgery and full recovery to Victor, and may his family feel comforted during this stressful time.

“We were discharged yesterday and he is recovering quite well. I would like to share with you a photo of him from the day we were discharged. He now has pink nail beds, which used to be quite purplish. I know that you share our joy in this miracle…”

Sam also sent 2 beautiful photos of Lucas–the smile is fabulous!

Like so many congenital heart defects, the prognosis for Truncus Arteriosus has improved greatly over the past 20 years.  What a blessing that we live in a time of great medical advances!  When I pray for the little patients I learn about through this website, I try to ask God to give great insight and skill to the surgeons as well.

“I have always believed in the power of prayer,” Sam writes, “and I hope that you could add us to your prayer list.”  Absolutely!  Let’s remember little Lucas and his family in these days leading up to Wednesday, August 17.

Broady Doland

Broady Doland will have surgery to correct his congenital heart defect, Partial Anomalous Pulmonary Venous Return (PAPVR), on May 5, at Children’s Hospital in Pittsburgh.  Like my son, Nathan, Broady has Scimitar Syndrome.

A nice article, “Benefit Aids Vandergrift Boy’s Family,” appeared today in  the Valley News Dispatch.   Family and friends have rallied to support Broady and his family.

Love and prayers to Broady, mom Traci, and the rest of the Doland family.

Sylvie with Jordan, "...a gift from Sydney."

In August of 2009, I connected with a lovely mother, Sylvie Stephens, through my Nathan’s Prayer website.  Her baby daughter, Sydney, was a patient at Children’s Hospital in Minnesota.  Sylvie and I exchanged long emails over a period of time as we hoped and prayed for Sydney to be healed as she battled a congenital heart defect associated with scimitar syndrome.

Since my own son, Nathan, had gone through surgery for scimitar syndrome, I became intensely interested in Sylvie’s plight.  Oh, how I wanted a miracle for Sydney!  Tragically, Sydney lost her battle on September 16, 2009.  I have never personally met Sylvie; our communication has been strictly through email.  Still, I spent much of that day in and out of tears over the loss of that sweet baby.

Then I prayed. Not for Sydney.  She was instantly swept into Heaven’s blissful embrace.  I prayed fervently for Sylvie.  I prayed that God would give her strength.  I prayed that she would receive supernatural comfort and peace.  And I prayed that one day God would bring her great joy and happiness.

Well, there is, indeed, joy in the morning! Weighing in at 6 lbs., 13 oz., little Jordan Tieszan was born on 3-11-11, just 3 days before the 2nd anniversary of Sydney’s birth.

Sylvie and Sydney

“It’s been so healing to have Jordan,” Sylvie reports.  “Sydney is always on my mind and in my heart. Jordan is such a joy and a gift from Sydney!”

“Your son is in heart failure.”

Bill was born with Hypoplastic Left Heart Syndrome in 1989. In those days, HLHS was practically a death sentence.  The best chance for survival involved securing a heart transplant within the first few weeks of life.  With only hours left to live, a donor heart came available, and Bill went on to live a childhood that was “colorful, carefree, and filled with innocent bliss.”  But at age 20, his transplanted heart along with his kidneys began to fail.  If he wanted to live, he would have to fight with every ounce of his being.

Bill does not sugarcoat the experience. Be prepared– the battle to stay alive when your body is failing can unleash anger and behavior that is explosive, rebellious, and desperate.  Swim is an uncensored, intimate account marked by psychological highs and lows.

As his condition deteriorated and his need for transplant became urgent, Bill wrote, “…I do believe that everything happens for a reason, but whenever I get down I start to wonder why I was born with a defective heart as an infant.  What made God choose me?”  As I read that passage, I could not help but feel that God knew Bill would write about his experiences.  When you close this book, you will appreciate life and understand profoundly the importance of organ donation.

Swim:  A Memoir of Survival is available as a quality paperback on Amazon or it may be purchased electronically for Kindle.  Signed copies can be purchased on the author’s website, www.BillCoonBooks.com.

Are you ready to SWIM?

Nathan watches a Disney video during EKG testing at Children's Hospital in New Orleans.

Annual checkups are an important part of maintaining Nathan’s heart and back health.  Recently, Bryan, daughter Michelle, and I traveled with Nathan to Children’s Hospital in New Orleans to see how his heart looks four years after surgery to correct Partial Anomalous Pulmonary Venous Return (PAPVR), a problem associated with his scimitar syndrome.

The echocardiogram seems to be a challenge for the technician each year.  His heart is positioned strangely in his chest (dextrocardia), so it takes a little patience to capture the desired images.  It doesn’t help that Nathan is extremely ticklish, especially when the transducer is placed at his neck.

During Nathan’s heart surgery, a baffle (tunnel) was created to redirect oxygenated blood from the right atrium to the correct chamber, the left atrium.  The last time the technician was able to capture an image showing the baffle was a few days after his surgery in 2006.  So it was a pleasant surprise when the cardiologist spotted it and reported that it appears to be unobstructed and working fine!

Nathan poses by a whimsical seahorse painting while he waits for one of his doctors.

In addition to his congenital heart defect, Nathan was born with a hemi-vertebra which was diagnosed as congenital kyphosis three months after his heart surgery.  We visited Nathan’s pediatric orthopedic surgeon on the same day.   I wish I had snapped a photo of the radiographs Dr. King presented to us.  One showed his spinal column right after spinal fusion surgery; a piece of cadaver bone replaced the hemi-vertebra and was easily discerned from his natural vertebrae.  The latest x-ray showed the cadaver-bone vertebra and the two vertebrae directly above and below had transformed into one solid piece, just as it was supposed to do.  There was concern, however, that the fusion was curving about 40 degrees.  If it continues to curve, reaching 50 degrees or more, it may be necessary to place rods in his back.

I hope, I hope, I hope… it will hold.

We pushed that thought out of our minds and went to Copeland’s after our day at Children’s.  We had their fabulous Spinach and Artichoke dip with fried bow-tie noodles for an appetizer (Nathan only eats the noodles).  Bryan had barbeque with cornbread.  Michelle and I had a delicious pecan encrusted fish.  Nathan had his usual–chicken tenders with fries.  Dessert:  Cheesecake Napoleon with praline sauce for us big kids, Big Al’s Chocolate Fudge Cake for Nathan.

Sometimes, you have to look at life’s challenges with the mindset of that famous philosopher, Scarlett O’Hara:  “I’ll think about that tomorrow.”

Sylvie and Sydney

Amazing Grace!

If you are not familiar with the story of little Sydney, please read these previous posts:  Pray for Sydney, Update, “God will give me strength…”, Nurse Angels, “I can’t kiss her enough”, “He will help me heal…”, Three Minutes of Wonderful, Happy six months…, Sydney is in a better place.  As you may recall, Sylvie’s daughter had scimitar syndrome which involves a complex congenital heart defect.  Little Sydney recently passed away.

As I sat in church this morning, I had Sylvie Stephen’s latest Caring Bridge post heavy on my mind.  I thought to myself, “As soon as I get home, I’m going to email Sylvie and ask if I can post her letter on Nathan’s Prayer.“  When I walked in the door, I went straight to my laptop, opened my email, and guess what!  She had already emailed me with permission to use it.  I encourage you to pass this gift around:

Now, I’m not one for college ball.  I love the NFL, but I’m watching the UF-Alabama game anyway.  I’ve

Tebow's message had special meaning for Sylvie, a mother who recently lost her daughter.

heard all the hype about Tebow, but really never gave him much interest.

I looked up today the scripture he had on his eye black, except that I looked up John 16:33 incorrectly thinking it was John 16:22.  Here’s 16:22:

“Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.”

If that is not my daughter speaking to me through God, through a college football player…. I don’t know WHAT IS!!!  I just cried and cried, and smiled and was comforted.

I am getting better every day.   There is relief in her death, because she is free from pain and she is absolutely SAFE.  But it is simply UNNATURAL to be seperated from my baby.  I described it to a friend recently that living without her is like being forced to live underwater without any gills.  I have to come up for air all the time and it is exhausting and HARD.  But, I can do it!  Just like dolphins can do it by design- so can I.  (PS- GO FINS!!!)

So anyway, college football has changed my life.

And by the way- I looked up John 16:33 and I already had highlighted it in my bible on 6/18/09.  Tebow and I are literally on the same page.

“I have told you these things so that in me you may have peace. In this world you will have trouble.  But take heart!  I have overcome the world.”

Love,
Sylvie