Hello, my grandson, Dmitri, is 18 years old and may be facing surgery for Scimitar Syndrome.  His mother, my daughter, just called me a few minutes ago and gave me the news.  He has to undergo a MRA to confirm the doctors’ suspicion.  Please pray for him because I know that I serve a God of miracles and that Dmitri is in his care.  Thank you.

I certainly will.  What a blessing it is that Dmitri’s doctors have so many wonderful tools at their disposal to diagnose and treat a variety of complex congenital heart defects.  Prayers to Dimitri and to you and your family during this trying time.

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.

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!”

On March 25, a cardiac catheterization will be performed–this will give the surgeons information to help them in the upcoming surgery.  Please remember Taylor, Riley Rae, and their family in the coming days and weeks.  Taylor has a nice blog about her cutie-pie at http://rileyrae.livejournal.com.

Whenever I think of Valentine’s Day, my first mental image isn’t of a romantic candle-lit dinner for two, or of clinking champagne glasses or a bouquet of roses.

Instead, I am transported back to the early 1990’s, where I sit in a circle of school desks, bedecked in a red and white polka-dot dress, lace tights, and Mary Janes. My hands are neatly folded on my desk, but my legs bounce frenetically as I watch my teacher and some volunteers prepare for our annual Valentine’s Day festivities. This will naturally include games, candy and snacks, but the main event will be the exchanging of Valentine’s Day cards. My elementary school wisely had taken an egalitarian approach to the latter, insisting that every student give a Valentine to every other student, much to the relief of little girls who weren’t, say, Holly Barton or one of the Dunlop twins. However, even an outright rejection from my crush, “Dan-the-Man,” wouldn’t have defeated my six-year-old heart on that day, because on my desk I had my box.

The box, which sat on my desk where my reader would usually be, would later be used to collect Valentines from my classmates. It had started as a simple payless shoebox, but in the evenings prior my mom had worked to transform it into something beautiful. The box was lined and covered in a red fabric patterned in tiny white hearts. The lid was also covered, and a thin slit had been cut in the top where my classmates could insert Valentines. The base of the box was trimmed with white lace ric-rac, and at the top of the lid, centered by the slit, was a tiny red bow. As I sat at my desk, waiting for the games to begin and the cookies to be served, I remember that I felt immensely proud of the beautiful box my mom had made for me, and special to be the possessor of such a quality treasure.

I kept that box for years, using it to store special notes and classmate’s photos, until it finally fell apart when I was in high school. Whenever I saw the box, I was reminded of the little things my mother did to make me feel special. I believe that it is important for children to occasionally have moments like this, where they know that they are cared for, loved, and important. These feelings help children to establish a solid sense of self, and the confidence they need to succeed as adults.

The nonprofit I work with, World of Children, is proud to host a network of heroes who give love and care to children who often don’t get it elsewhere. Our Award Winners are special because they don’t just increase children’s life spans, but they also dramatically improve the quality and trajectory of children’s lives, giving them the intricate, special care that they all so desperately want and need.

This Valentine’s Day, to help a child feel special, I am giving a few friends a Valentine’s Day e-card, available from the World of Children. All funds raised from these e-cards will be designated for Adi Roche, who provides cardiac surgeries to sick children born with congenital defects. Each $15 card will fund approximately 2% of a surgery.  This Valentine’s Day, help us make sure that every child knows that they are loved, cared for and remembered. If you would like to browse e-cards you can send this Valentine’s Day, please click here.

Lisa, I can feel your anxiety.  My son, Nathan, also had PAPVR, but his was complicated by his dextrocardia (his heart was severely rotated backward).  He was successfully treated at C.S. Mott Children’s Hospital in Anne Arbor, Michigan.  I am so grateful that we live in a time of great medical advances for children with Congenital Heart Defects.   Prayers for Gage and to you and your family.

Despite a variety of surgeries during his childhood, Paul’s heart began to fail when he was a young adult.  One look at a photo of his beautiful wife and daughter, and clearly, he had no choice but to continue his fight.  Sadly, while Paul waited for a donor heart, his brother died unexpectedly.  His family experienced firsthand the painful emotions that come from being on the donor’s side of heart transplant surgery.  Ninety days later, a donor heart came available for Paul.

As I read some of the posts on Living for Eden, I couldn’t help but reflect on the years when our family fretted over finding the right surgeon for Nathan.  There is a temptation sometimes to hide in denial.  Maybe he’ll be all right without surgery, I wanted to believe; so fearful that my boy might not make it through open heart surgery.  Ultimately, I knew I couldn’t live with myself if I allowed his condition to go untreated.  I remember specifically telling myself that I did not want to be responsible for Nathan struggling with heart failure at a young age because I didn’t have the guts to follow through with surgery.

Of course, it’s always helpful to have a spare brain in the house (Bryan!). If Nathan’s mom had flaked out, Nathan’s dad would have definitely taken the reins.  Taking care of this in childhood will spare him the tragedy of heart failure as a young adult.  Similarly, Paul Cardall’s family saw to it that he had the best surgical treatments available during his childhood.  Unfortunately, that was not enough given the complexities of his heart defect.  But, thanks to a kind soul’s decision to be an organ donor, Paul continues to enjoy life with those who love him.

Living for Eden! A great congenital heart defects blog!  Know of another?  Write me.

Sylvie Stephens spends precious time with her daughter, Sydney.

Sylvie Stephens’ journey with her daughter, Sydney, has been such an inspiration to me. When it became clear that Sydney was heaven bound, God’s grace took over and gave Sylvie the strength to fill her sweet girl’s days with love and happiness.

Sylvie is not the first nor will she be the last parent whose time on earth with a beloved child is brief. It occurred to me that God has blessed Sylvie with a generous spirit and a willingness to help others who are going through a frightening health trial with a child.  She has agreed to write an occasional article and answer questions for Nathan’s Prayer.  I had an opportunity to ask her a few questions.

Karen:  Sylvie, so many people have read about your journey with Sydney, your beautiful baby girl who lost her battle with a congenital heart defect last September.  Tell me a little background information about yourself.

Sylvie:  I spent six months with my daughter at Children’s Hospital in Minneapolis, constantly surrounded by medical professionals and God’s presence.  I witnessed her care and procedures, read her charts, familiarized myself with vital signs, metrics and medical terminology.  I work as an engineer.  What medical knowledge I picked up during those six months was absorbed through the experience (never through my own research).  I grasped what I could in the medical sense, and prayed for understanding of the rest.  Faith filled in the gap.

Karen:  For many people going through a health trial with a child, their faith is focused only on God allowing their child to live, not giving them courage to deal with death if that’s God’s will.  How did your faith and your walk with God evolve as you realized your time with Sydney was limited?

Sylvie: I remember always praying for God to hold her in His arms when I could not before falling asleep.  I began my prayers like this when I was in the NICU parent sleep room when she was very little, just days old.  What I meant by my prayer was that I wanted her to feel wrapped in love when I, the person that loves her most, could not physically be with her.  At first, there was a fear in my heart as I would say this prayer.  I would cry in agony and would want to take the prayer back when I realized my prayer may be answered- she would be in God’s arms, but not in mine ever again.  But, with the grace of God, I realized a mother’s resolve:  what was best for my Sydney, not best for me.  The ultimate sacrifice.  I grew to accept that the best life for Sydney could not be materialized in this world.  Coming to terms with that was the first step, letting her go was another, and was much more difficult.

Karen:  Thanks, Sylvie, for sharing your journey.

If you haven’t read previous posts about Sylvie and Sydney, here are a few:  Pray for Sydney, August Update, Strength, Nurse Angels, Kisses, Letting Go, Birthday, and A Better Place.

Sylvie welcomes your questions about parenting and loving a child with a congenital heart defect.  Send your questions either by commenting to this post or by email (see “contact” at the top of this page).

I get a little misty listening to it.  I hope anyone who finds this poem/prayer/song (especially those who have children with congenital heart defects) will feel blessed.

Dr. Edward Bove is experienced in the treatment of complex congenital heart defects.

Back in April, I attached this photo to a post I wrote about Dr. Edward Bove (the surgeon who performed our Nathan‘s surgery in 2006).  I learned from Phil Eppard, that the little fella’ pictured with Dr.  Bove is Phil’s son, Aidan.  The photo was taken in 2005 after Aidan’s first heart surgery and has been used in “The Michigan Difference” campaign.

That’s pretty cool, but it’s not the reason I’m saying “Hooray for Aidan.”  Apparently, under the excellent care of Dr. Bove, Aidan had his second heart surgery yesterday, and it went great!  Aidan is out of PICU and in a regular room now.

The photo has been reproduced as a giant banner that hangs at the hospital for all to see.  So Aidan is famous at the University of Michigan Medical Center. 

Update:  9-19-09  Aidan has been discharged and is on his way home.  Best wishes to the Eppard family.