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.

My daughter, Brittani, is 19 years old and has just been diagnosed with Scimitar Syndrome.

She was diagnosed as a baby as having Dextrocardia and has had no health problems whatsoever. She became pregnant which ended in a miscarriage. During the D & C preop testing and chest xrays, they noticed the Scimitar. They said she needs surgery soon or she will die of heart failure by the age of 25. They also told her that the miscarriage was a blessing because her heart would not have been able to handle the stress.

She is going to see a specialist in St Louis, MO on Wednesday, 11/9/11 to get a referral to a surgeon. This has hit us really hard since we had no clue that anything was even wrong. She hasn’t had any symptoms at all.

Please keep her in your thoughts and prayers.

I have heard other examples of how an unrelated health event led to the discovery of serious health issues that may have gone undetected otherwise.  So sorry for Brittani’s loss, but grateful that her Scimitar Syndrome has been found and can be corrected. Prayers to both you and Brittani.

Nathan at Children's Hospital in New Orleans - pulmonary function tests.

Stressful, stressful, stressful.  That’s how I would describe these past few weeks.  I always dread Nathan’s annual checkup.

I know exactly why I have a hard time settling down.  Nathan’s heart surgery about five years ago was the most stressful event our family had ever faced.  When we got the news that the surgery was a success, we felt so joyful and relieved.  It felt like an enormous burden had been lifted.

As he was recovering at home, we decided we needed to have a pediatric orthopedist take another look at the little deformed vertebra he was born with.  We had been told to be on the lookout for scoliosis.  His back looked nice and straight, so we weren’t particularly worried about it.  But we wanted to play it safe–make absolutely certain that his back was A-okay.

So I set up an appointment about 3 months after that harrowing heart surgery.  I didn’t even bring Bryan for support.  I could handle this by myself because I was dang-near certain there was nothing wrong.  Heaven help me–I was so wrong.

A side view x-ray revealed that he had congenital kyphosis and needed spinal fusion surgery.  It was awful to hear that he was looking at another surgery, and it was going to involve a difficult recovery, a body cast, and a body brace.

Now, I can’t help but feel this sense of dread when I go to these checkups.  I always wonder:  Is someone going to surprise me with some more bad news?

Echocardiogram

We saw three different specialists this week.  First, we got some advice from a pulmonary doctor.  A component of Nathan’s scimitar syndrome is that he has a hypoplastic lung.  The top third of it functions, but the rest of it is practically useless.  We know he has allergies, but we have also suspected he has asthma.

After pulmonary function tests, it was determined that he did, indeed, have asthma.  He will need to use an inhaled steroid each day to improve the inflammation in the alveoli of his lungs.  This will prevent further damage and improve his lung function.  I am very, very glad we met with this doctor.

Next stop:  cardiology.  After an EKG and echocardiogram, the doctor informed us that the baffle created during Nathan’s 2006 heart surgery appeared to be functioning just fine.  Instead of coming every year, he suggested every two years (!) would be reasonable.  Felt so good to hear that.

Finally, we took x-rays to see how that spinal fusion was holding up.  This was the moment of truth.  Oh, oh, oh–I was so nervous.  Last year, we were told the fusion had solidified nicely, but it was starting to curve.  The curve was at 43 degrees.  If it reached 50 degrees, he would need another surgery.

Had the curve worsened?  Yes.  But…  It had only worsened by one degree.  And the doctor elaborated on what we were looking at if a growth spurt causes the curve to hit that dreaded 50 degrees.  Instead of the big deal surgery he had back in ‘07, he would cut through a simple layer of skin directly to the spine and place a few bone grafts.  He would be released the next day–no body cast, no brace.  I could live with that.

All in all, a good day.

Our beautiful daughter Callie was adopted from China almost two months ago. She was diagnosed last week with Scimitar syndrome and we are in the process of making decisions on how best to proceed. The doctors are not in agreement at this point on whether or not to go ahead with surgery or postpone it and monitor her closely. At this point we are still uncertain as to whether the benefits outweigh the risks. Please pray for us as we make some crucial decisions within the next few weeks.

Prayers for clarity and peace as you consider options.

Read about this family’s wonderful adoption story at www.myadoptionwebsite.com/callyn, and don’t forget to sign their guestbook.

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!”

Abby shared with me a beautiful photo of Colin.  It reminds me of the fantasy book cover created for my story about my own son, Nathan.

Alisha wrote:
“Regarding the tutu project, I went through a very special organization called Tutus and Tuques (www.tutusandtuques.com). I thought that this organization’s mission along with the tutus was a beautiful symbol of Sydney. I also wanted to honor a little girl whose mom is a part of our mother’s club. She was diagnosed with leukemia when she was little and just went into remission in September. I shared Sydney’s and Hannah’s story with some friends, neighbors, and members of the North Aurora Mother’s Club to see how many volunteers that I could get to help. The cool thing about it, too, was that there were several children who helped with the project as well. Wherever you choose to donate the gifts, I am sure that they will put a smile on the faces of those little kids, and that is one way Sydney has touched our lives… just the thought of her makes me smile like the sun couldn’t beam any brighter!”

I donated the beautiful tutus and tuques to Child’s Voice, an outpatient medical evaluation center for children who may be victims of physical and/or sexual abuse and neglect. There is no better tribute to the life of a child than to pass kindness on to others… especially other children. A heartfelt thank you to Alisha, the moms in North Aurora and Tutus and Tuques!

Sylvie

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.”