“Poe, my 12yr old son, will be undergoing open heart surgery on Friday, the 17th of February to repair an anomalous origin of the left pulmonary artery. Thank you for Nathan’s prayer and thank you to everyone out there that will pray for our Poe. We are already praying for everyone on the list and out there. Thank you once again.”

Prayers for your young man, Poe!  And thanks for remembering the other families on Nathan’s Prayer.  I’m reminded that Valentine’s Day is a few days away ~ as we celebrate with candy hearts and cards, we are blessed to have wonderful men and women dedicated to repairing the real hearts of our loved ones.  God bless them all.

I’m not aware of many memoirs written about a family’s struggles with their child’s congenital heart defect.  Veronica is painfully familiar with the ups and downs of loving a child with serious medical issues.  She shares the following article, “What Now?  Finding Support after Discharge” with Nathan’s Prayer:

When you are a part of something long enough, it becomes your normal… even if it is not normal. Being trapped in a pediatric intensive care unit for weeks or months is not normal, but it becomes part of you. After a while it is familiar and perhaps even comfortable. It is the only world you know. You are forced to live in it and its boundaries.

Eventually you leave the ICU, hopefully with a cured and healthy child. You go home to what used to be your normal, but has now become foreign territory. So you are forced to adjust quickly—again. There are no more nurses caring for your child around the clock. You are now the nurse. There are no more doctors visiting several times a day, diagnosing and observing. You now play that role. There is no one to administer medication, feed your child, change your child, and do their laundry on a daily basis. You now do it all. It can be scary, lonely, and you may feel deserted.

You are not alone. For every childhood illness, disease, or syndrome there is most likely a support group. While we were still in the hospital with our son, who was born with Congenital Heart Defects (CHD), a mom whose son also had CHD, told me about a support group. I did not pay much attention to this information at the time because I did not know when or if my son would make it out of the hospital. But today I feel fortunate to be a part of Mended Little Hearts and share our lives with other CHD families. Mended Little Hearts is a national organization that partners with hospitals to “…connect families in crisis with other parents who have survived the shock of learning a child has a heart problem, navigated the maze of medical decisions and procedures, and mapped out a plan for the future.” (http://mendedlittlehearts.wordpress.com/)

A few weeks ago several Mended Little Hearts families in the Chicago land area came together to celebrate our heart babies during the Valentine’s holiday. It was so special to see these little miracles run around and play like other healthy kids. It is a privilege to be a part of a group like this where there is opportunity for support, friendships, education, volunteering, and fundraising.

If you are a part of a support group please share with us your story! You are welcome to share pictures, links, or any other information that could help others, just use your discretion and respect privacy. Thank you!

Veronica Janus is a mother, writer, and the founder of Forever Moments, an organization that gives families with babies in the ICU hope and joy through photography (2009-2011). The author was born and raised in Sweden and moved to the United States to pursue undergraduate and graduate work. She holds an MA in Theater and Communications and a MEd in English.  Veronica lives in Chicago with her husband and three young children.

Want to win a copy of Veronica’s book? Post a comment.  I’ll put your name in a hat and get Nathan to draw the winner on September 5, 2011.

“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?

While enjoying a perfect fall day downtown, we went inside a Macy’s Holiday Store filled top to bottom with Christmas decorations. Almost trance-like, forgetting it’s not yet Halloween, I went in search of a pink Sydney Ornament. I lost my baby girl at 6 months and 1 day to Scimitar Syndrome and other complications. This fall I decided each year I will select a pink Christmas ornament in memory of Sydney to place on our tree. This year I selected a pair of pink toe shoes, as one of my dreams for Sydney included ballet classes.

But maybe if Sydney would have lived, I would have bought a pink heart ornament instead. A heart ornament for each year of life following her open heart surgery. We would have filled our Christmas tree with many, many hearts throughout the years.

I thought I would pass along this idea for those that have lost children, a way to have their presence at Christmas. This is also a great idea to celebrate the children that have survived, to celebrate their resilience and bravery.

Aren’t the best ornaments the ones with special meaning? I have a collection of “stolen” ornaments from my mother’s tree, ornaments made by her hands, and those are my favorite. Each year she makes a fresh batch of ornaments, and then pretends not to look as I sneak one off her tree then later hang on mine. I have collected dozens! One day my children, Sydney’s legacies, will have some “Sydney Ornaments” from our tree on their tree. They will know their big sister.

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.

Sydney Elizabeth has Scimitar Syndrome. She is a patient at Children's Hospital in Minnesota.

It is with a heavy heart that I post this letter from Sylvie Stephens, mother of Sydney.  I am inspired by her strength and faith.

Never give up faith.  Never.

On Monday, the doctors indicated that Sydney is having multiple organ/system failures.  It breaks my heart to tell you all that she will not ultimately survive.  There is nothing the medical team can do for her except offer comfort, dignity and loving care.  Yesterday we had a care conference with her doctors and nurses where we decided the goal of her care is to keep her comfortable.

Currently, she is well and having quiet alert periods.  She is living her life happily.  She is at peace.

Many parents have lost children, I won’t be the first.  But I have the privilege of having the awareness to make each moment with her count from here on out.  I am drinking her in everyday, and focused only on her.  I try not to think about what is to come, rather live in the moment that is the joy of being with her.  She is the greatest blessing of my life.  I am changed for the BEST because of her.  I will always have her with me.  Always.

Without faith, how can any mother survive this?  I prayed to God to always hold her in the moments when I can’t, and He will answer this prayer.  I have always prayed for her protection from pain and suffering, and this too will be.  I would rather suffer the loss of her than have HER suffer.  But what loss?  She is mine, and always will be.  Her and I are connected forever, heart and soul.  I am really not losing anything.  But I have gained so much…

I don’t know how much time there is left.  My goal is to be with her as much as possible.  Family and friends can pray for our family, pray for her comfort.  Hope is still around us.  It’s only changed form.  I appreciate all of you going through this journey with Sydney, and I offer my love and compassion for your feelings of sadness and loss.  She is a light in all of our lives.  No one will forget this precious little girl.  Our lives are better because of her.  She did have purpose.  I will never know how many people prayed for her.  How many became closer to God because of her.  How many held their own children a few minutes longer each day because of her.

As for all the blessings she has given me, there are too many to share right now, and I am anxious to go back to bedside with her.  She had a wonderful bath and is in an adorable outfit.  She looks beautiful and is very comfortable.  Her blue eyes are so tender and innocent.

We are all connected by her.  Please celebrate her life and her gifts to us.  She is loved by so many.  Thank God for Sydney Elizabeth.

heART

• Heart defects are the most common and deadly of all birth defects.
• Approximately 36,000 babies are born each year with a congenital heart defect.
• In 1950, a child born with a congenital heart defect had only a 20% chance of survival.  Today, survival rates have increased to 90%.
• Survivors of successful childhood intervention face life-long risks, including heart failure, stroke, and rhythmic disorders.
• Each year, nearly twice as many children die from CHD in the U.S. than from childhood cancer, yet funding for pediatric cancer research is five times higher than funding for congenital heart defects.
• For every dollar the government spends in medical funding, only a fraction of a penny goes toward congenital heart defects research.

My son, Nathan, now eight-years-old, has Scimitar Syndrome. His surgery, performed almost three years ago, was successful.

The abnormal pulmonary vein may be connected to the inferior vena cava or directly to the right atrium, sending already oxygen-rich blood into the chamber that sends blood to the lungs.  Because this is an inefficient way for the heart to work, the heart can become enlarged and weakened.  Untreated, this CHD can lead to dyspnea (breathlessness), atrial arrhythmias, pulmonary hypertension, and heart failure.

Other components of scimitar syndrome include dextrocardia and hypoplasia.  Dextrocardia, the severe rotation of the heart onto the right side of the chest or the mirror-image presentation of the heart, requires no surgical intervention.  Hypoplasia, however, can be associated with recurrent bouts of pneumonia, and in some cases, pneumonectomy or removal of the hypoplastic lung is necessary.

For some patients, conservative treatment is an option.  But if more than half of the pulmonary veins empty into the right atrium, it may be necessary to reroute blood flow into the left atrium.  This is achieved by surgically constructing a “baffle” or tunnel out of the patient’s own pericardium, creating a pathway through the right chamber and into the left.

A different approach may be warranted for patients with a large systemic collateral artery.  Coil occlusion, the placement of a coil to block blood flow, can improve symptoms of heart failure in infants with scimitar syndrome and can be a good surgical correction for this condition.

On a personal note, Scimitar Syndrome is the heart condition that my own child has battled.   See these related articles on this website:  Dr. Edward Bove, Nathan’s Prayer,  About, Partial Anomalous Pulmonary Venous Return, A Memory of Scimitar Syndrome, Three Year Anniversary.

Also see my article in Parents magazine:  “Nathan’s Wonder Slide”

Does your child have Scimitar Syndrome?  Is he/she facing surgery?  Consider adding your child to our prayer list.

At the risk of sounding melodramatic, I believe this book may have saved Nathan’s life.  Walk on Water is Michael Ruhlman’s raw, uncensored look at the life and death drama that takes place in the world of pediatric heart surgery.  Most congenital heart defects (septal defects, e.g.) are routinely corrected, but occasionally, a child presents with complicated or multiple heart defects.  An assumption that all surgeons are created equal can lead to tragedy.

Brace yourself.  The language is frank, and the surgeries are graphic, which can be an emotionally-charged experience for those of us faced with our own child’s drama.  But the understanding and empowerment you will glean from these pages is priceless.

-Karen