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

Nathan Blakeney walks for the first time after spinal fusion surgery. In this moment, he was finding his courage.

If you have a child with a congenital heart defect or any other birth defect or illness, you have silently asked,”Why did this happen to my child?”

Sometimes we ask the question because we wonder if we were exposed to something toxic:  Fumes from fresh paint?  Bug spray?  Medicine taken before we knew we were pregnant?  Sometimes we wonder if we were negligent:  Did I eat too much of this?  Not enough of that?  I asked all of those questions and more after Nathan’s birth.

But oftentimes, we are asking a bigger question.  God, why did you allow this to happen to my child?

I believe the first few verses of John 9 are meant for us:

As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi, who sinned, this man, or his parents, that he was born blind?”  “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.

I don’t believe Jesus is saying that these parents and this man lived completely sin-free lives – He’s saying sin is not the reason for the affliction.  A child with health challenges is a gift, not a punishment.

Before Nathan was born, we were aware that he was not perfect.  Some parents, I’m sure, would have made the decision to terminate.  And what a terrible shame.  Nathan has been a great joy to our entire family.  We have seen “the work of God…displayed in his life.”

Walk and listen. Pray and learn.  God  has a plan for every little life.

Nathan regains consciousness after surgery to correct Partial Anomalous Pulmonary Venous Return (PAPVR), Scimitar Syndrome. This was taken in PICU at C.S. Mott Children's Hospital in Michigan.

As Nathan regained consciousness after heart surgery, I wanted to snap a photo to record the moment.  Partially out of habit, and partially out of pure joy at seeing his eyes flicker, I blurted out, “Smile!”  Instantly, I felt ashamed of myself given the ordeal he had just come through.  But ever-obedient, his lips slowly assumed the position.

He’s smiling for real these days – the surgery to correct his congenital heart defect was a great success.

[See also:  About, Nathan's Prayer, Dr. Edward Bove, Before the Back Surgery, The Principle of Finders Keepers,  Body Cast, Three Year Anniversary]

In our situation, surgery was far enough into the future that it seemed premature to burden him with information that could wait. Our approach was to refer to appointments with pediatric cardiologists as “check ups.”  Both of us were present at these appointments so one of us was able to engage him in distracting conversations or games while the other spoke with the doctor about the particulars of his condition or the details of surgery.  When we finally secured a surgery date, our instincts proved correct as the surgeon recommended we postpone talking to our five-year-old son until two weeks before the surgery.  Presenting information too far in advance can potentially create unnecessary, prolonged anxiety.

Tips for speaking with your child:

Nathan takes his first walk down the hall after heart surgery to correct PAPVR, Scimitar Syndrome. His surgery was performed at C.S. Mott Children's Hospital, an excellent facility for the treatment of congenital heart defects.

• Gather your thoughts before you speak.  It may help to write an outline of what you need to discuss with your child.
• Keep the conversation simple.  Let them know a doctor is going to make their heart work better so they will grow strong and healthy.
• Assure them that you will be there for him/her during their hospital stay.
• Ask them if they have any favorite toys, books, or DVDs they wish to bring.
• Books such as Franklin Goes to the Hospital can be great tools for introducing unfamiliar hospital practices to your child.

When your child transitions into the teen years, it is important to explain in more detail the type of congenital heart defect he/she has, how it has been managed, and what kind of treatment may be necessary in the future.  According to the National Heart, Lung, and Blood Institute, this kind of frank discussion will help your teen to begin taking responsibility for his or her health and “ensure a smooth transition from care by a pediatric cardiologist to care by an adult cardiologist.”

Nathan enjoys a little father and son bonding.

Remember that childhood surgery is not a “cure” for a congenital heart defect. Make sure your teen understands the importance of followup care throughout adulthood to maintain good health.

The Sea Climb at Lynn Meadows Discovery Center; Gulfport, Mississippi

“This is great, Mom,” Nathan said as I pulled in at Lynn Meadows Discovery Center. “It reminds me of my childhood.”  Nathan is only eight-years old, but seems to believe he is no longer in his childhood.  In a way, I understand his perspective.  After all, he was a regular at “Meadows” (Nathan-speak for LMDC) when he was three and four-years-old.  That’s half his life ago.

Due to reasons beyond our control, our trips to LMDC stopped abruptly. First, Hurricane Katrina swept an 11-foot storm surge through the first floor, destroying the exhibits, and causing catastrophic damage to the supporting structures:  the education building, the gymnasium, and the extensive tree houses built among the live oaks.

Nathan in the Sea Climb; Lynn Meadows Discovery Center; Gulfport, Mississippi

Then, as the community and corporate sponsors pulled together to rebuild LMDC, Nathan’s life became dominated by surgeries. The first surgery occurred in Michigan’s C.S. Mott Children’s Hospital to repair his congenital heart defect (he has Scimitar Syndrome with PAPVR).  After heart surgery, we learned he had Congenital Kyphosis and needed spinal fusion surgery to prevent paralysis.  He was in a body cast for several months afterwards. So we stopped going for a while, and  Nathan seemed to have forgotten his old stomping grounds until I drove into the parking lot two weeks ago.

He quickly recollected his “childhood” and began reenacting scenes from that era.  He scrambled up the Sea Climb, pausing briefly for me to take a couple photographs.  He hopped out at the History Hotel on the second floor  and sat down for “tea” and a plate full of “pastries.”

Nathan rings up groceries at Lynn Meadows Discovery Center; Gulfport, Mississippi

He visited Mexico at Celebrate the World We Share and shopped for groceries at To Market, To Market (chocolate milk, a baguette, an orange, Orville Redenbacher Popcorn, and a crab).  Then he executed a flawless cooking show as if he were Emeril Lagasse in the LMDC Television Studio.  He also performed about a half dozen experiments in A Matter of Science (and he thought he was just playing).

After a kayak ride down the bayou, Nathan made his way down Sea Climb to check out the first floor exhibits.  He hopped a train at the Dolan Avenue Depot, and spent some time at the spacious train table.  After riding the rails, he took to the seas at The Port, manning the helm and ringing the bell on a shrimp boat.  Feeling a little creative, he stepped down the hall to the art room where volunteers showed him how to do “scratch art.”

Bubblemania at LMDC

When Nathan’s masterpiece was completed, we decided to take a shortcut through Bear Camp Bayou (for children under four) to check out Bubblemania, an outdoor summer exhibit.  By pulling a long cord, he made a huge bubble sheet at one station.  Then he tried out a machine that formed hundreds of tiny bubbles between two glass panes.  Mostly, he liked making large bubbles with the assorted bubble wands.  No one was looking, so I made a few myself (if the Executive Director, Cynthia Minton, can do it, so can I ).

It’s amazing how fast two hours goes by at LMDC.  I told Nathan it was time to go home, but he managed to talk me into ten more minutes.  He needed to make a run through The Tree House Village for old time’s sake.  I hated to interfere with his quest to reconnect with his childhood.

Nathan waves from the Tree House Village at LMDC.

[The Lynn Meadows Discovery Center is open Monday - Saturday, 10:00am to 5:00pm, during the summer (Tuesday - Saturday beginning August).  Tickets are $7 for adults and children over age one.  Family memberships are also available.  For more information, contact LMDC at (228) 897- 6039 or check out their website at www.lmdc.org.]

Upcoming Events at LMDC:

•The WINGS Performing Arts Center of LMDC presents “The Wiz” at MGCCC, Jeff Davis Campus, Fine Arts Auditorium, July 17-19.  Click here for tickets and details.

•A Circle of Friends presents “Performing Friends” on Saturday, July 25, 2009, 10am to 4pm.  This free event will be held in the WINGS Performing Arts Foyer at LMDC.  This is a family fun day which focuses on disability awareness.

DisabilityConnection.org, an Internet Resource Center for people with disabilities, has partnered with LMDC to bring this event.  Expect a great day of performances, demonstrations, door prizes, games, food, and booths.

Patch sewn on the back of Nathan's Quilt; Prayers and Squares Quilting Ministry

Soon after Nathan’s birth, a former classmate of mine, Debbie Allison, learned of our concerns regarding his congenital heart defect.  Debbie lives in California and was attending Hope United Methodist Church in Rancho Bernardo.  The lovely ladies there had a “Prayers and Squares Quilting Ministry.”  Whenever they learned of a child with health challenges, these ladies would spring into action by creating a colorful quilt.

Each quilt is dedicated to a specific child and decorated with several bright embroidery knots.  According to the personalized patch on the back corner, “Each knot represents a prayer that was said for you.”  To the ladies who sent this beautiful gift, I want to say thank you for pouring your love and faith into this project and for praying for a baby boy that you had never laid eyes on.  Except for a tiny bit of gum on one corner, it’s still in great shape!  I know Nathan will cherish it forever.

Visit the Prayers and Squares website at:  www.PrayerQuilt.org

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.

1. Normally, the right pulmonary vein enters the left atrium here. 2. In PAPVR, the right pulmonary vein abnormally enters the right atrium.

This is one of the best illustrations I have found for explaining PAPVR.

Partial Anomalous Pulmonary Venous Return (PAPVR) is a rare congenital heart defect in which blood flow from one or more of the pulmonary veins return to the right atrium instead of to the left atrium.  This is a problem because the right atrium shoots this already oxygenated blood right back to the lungs to be oxygenated again.

Of course, this is a very inefficient way for the heart to function. The heart must work extra hard to provide an adequate amount of oxygenated blood to the body; and over time, this causes a variety of consequences, including arrhythmias, pulmonary hypertension, and right-sided heart failure.

If 50% or more of the pulmonary veins anomalously return, this is considered clinically significant enough to warrant surgical correction. If the patient has an Atrial Septal Defect, the surgeon will close the defect with a patch and redirect blood from the anomalous pulmonary vein to the left atrium.  If there is no ASD, a baffle or tunnel will be created to redirect blood to the left atrium.

PAPVR associated with Scimitar Syndrome has the added complication of dextrocardia. The surgery will likely be performed on a heart that is rotated backwards.  The atrial septum is usually intact.

Our first look at Nathan after heart surgery

My own son, Nathan, had this surgery on July 25, 2006, at C.S. Mott Children’s Hospital at the University of Michigan Medical Center. Our experience included a full day of preliminary testing, surgery the following morning, and a stay in PICU.  After extubation, he was moved to a regular hospital room where he spent the first few days on strong pain medication.  Removal of the chest tubes occurred on about the third day–this was somewhat emotionally challenging but was successful, nonetheless.  By that evening, his personality began to return.  On the fourth day, nurses encouraged him to take a brief walk down the hall.  By the fifth day, he was well enough to be released!

Nathan takes his first walk down the hall after heart surgery to correct PAPVR, Scimitar Syndrome. His surgery was performed at C.S. Mott Children's Hospital, an excellent facility for the treatment of congenital heart defects.

We used a number of child-friendly books to prepare Nathan for surgery.  One of his favorites was Franklin Goes to the Hospital.

Other related posts on this website include:  Scimitar Syndrome, Dextrocardia, Nathan’s Prayer, Remembering C.S. Mott, and Dr. Edward Bove.

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

If your child has an upcoming heart surgery, consider adding him/her to our Prayer List.

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

When faced with a complicated congenital heart defect, confidence in the skill and expertise of your child’s surgeon is of paramount importance.  When our son, Nathan, was diagnosed with Scimitar Syndrome, a rare condition characterized by dextrocardia, pulmonary hypoplasia, and Partial Anomalous Pulmonary Venous Return, we soon learned that our local surgeons had no personal experience performing the required repair.  After reviewing Nathan’s medical records, the closest doctor with a successful surgery under his belt was not willing to proceed due to the “severe rotation of the heart.”

There was tremendous anxiety in our household as we considered our options.  Do we allow a willing doctor to perform the surgical correction even though this would be his first attempt?  Or do we continue to search for a doctor skilled in correcting this rare CHD, possibly allowing Nathan’s heart to weaken in the passing months?

Thankfully, I came into possession of Michael Ruhlman’s book, Walk on Water:  Inside an Elite Pediatric Surgical Unit, which documents Dr. Roger Mee’s dynamic team at Cleveland Clinic in Ohio.  Mee, I discovered (to my initial chagrin), had retired, but the name of another “Walk on Water” surgeon caught my attention–Dr. Edward Bove.

I described our son’s condition to him via email, and was thrilled when he quickly and graciously wrote back that he “would be honored to evaluate” our son for surgery.  Bryan and I were extremely impressed with his credentials.  He had an 85% success rate with Hypoplastic Left Heart Syndrome, a complex condition requiring a series of three surgeries in order to transform half of a heart into a functional heart.  After reviewing Nathan’s medical records, he called one day to inform us that he would perform the surgery.  I took down the necessary appointment information, thanked him, hung up the phone…and shook for the next few minutes, in the grips of an odd combination of joy and terror.

In July of 2006, our family of seven boarded a plane in Hurricane Katrina-ravaged Gulfport, Mississippi, and flew to Ann Arbor, Michigan.  At the C.S. Mott Children’s Hospital, University of Michigan Medical Center, Dr. Edward Bove constructed a baffle out of Nathan’s own pericardium to tunnel through the right atrium to the left atrium, successfully rerouting oxygenated blood to the correct chamber.  That’s not even a Reader’s Digest Condensed version of the story, but suffice it to say, we will forever be grateful to Dr. Bove and his team at C.S. Mott.

"I think I'm starting to look like Sparky..."

The Sunday before Nathan’s back surgery (to correct Congenital Kyphosis), I knew his last fun event would be the Awana Club meeting held that night at our church, Grace Memorial.  By the week’s end, he would be recovering in a body cast, a fact that had Bryan, me, and other family members sad and worried.  The year before, we had made it through surgery to correct a congenital heart defect known as Partial Anomalous Pulmonary Venous Return, a complication of Scimitar Syndrome.  We felt like:  “Oh, no, here we go again.”

The previous Sunday, Nathan had won the coveted “Sparky Award,” meaning he had earned the honor of spending the week with the stuffed firefly toy that served as the club mascot.  He would be returning Sparky and leaving the next morning for Children’s Hospital in New Orleans.  Before the meeting, Nathan and I sat down at my computer and concocted a letter to let his friends know he would not be coming to meetings for a while.  I don’t know if I’m right about this or not, but I have always suspected that God is particularly moved by the prayers of children.  In a way, this was probably my sneaky way of soliciting sweet petitions from His favorite little folks…

As we created the letter, I remembered a picture I had taken of one of Nathan’s amusing antics.  He had the wild idea to cover his face with Sparky stickers one day and, after recovering from the initial shock of his unexpected appearance, I snapped the above photo.  So we left this letter and the funny (maybe a little creepy?) picture with Awana Director Jamie Carver before we left the club meeting that night.

Nathan mugging with Awana leader, Larry Burns

To be truthful, my own ability to pray had become “crippled” so to speak, so I am grateful that the children and my church family picked up my slack.  The letter was shared with club members and the kids sent Nathan adorable handmade cards as he recovered.  I am told that they did, indeed, pray for him.

What a thrill it was to return to Awanas the following month!  He was not able to participate in the signature Awana running games, but our youth minister, Evan Dickson, cleverly had Nathan “calling the shots” during the games, allowing him to feel “in charge.”

As the months went by, he soon transitioned into a custom-made body brace, and little by little, regained his ability to run and play.  The body brace is gone… now it’s all just a terrible, and in some ways, wonderful, memory.

Related post:  The Principle of Finders Keepers