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 Madison has just been diagnosed with Partial Anomalous Pulmonary Venous Return.  I’m so glad I found your story.  Please keep Madison and our family in your prayers!”

I will.  Nathan had cardiac catheterization at two, and it was determined that his PAPVR needed to be addressed surgically.  A good illustration and explanation of PAPVR can be found on the Cove Point Foundation website.  I hope you will be encouraged to read:  “Recovery from this operation is usually straightforward, requiring a hospital stay of 3 to 4 days.”  Also, note that PAPVR might not be severe enough to require surgery.  Blessings to Madison and your family.

And even more intriguing–Tebow is well known for sporting “John 3:16″ on his eye black.  Last night, he passed for 316 yards against the Steelers–three sixteen!  Not only that, he completed 10 of 21 pass attempts which amounts to 31.6 yards per completion.

I think God put his footprint on that game

“I’m just 30 weeks pregnant and my baby has been diagnosed with TAPVD/R.   Please pray that the next scan shows that there is nothing abnormal and that it was a misdiagnosis.  We have waited so long for her and can’t even start to believe it.”

I pray that this is a misdiagnosis.  BUT…if it’s not, I pray that God will give you the strength to get through your child’s health crisis.  My Nathan had PAPVR (Partial Anomalous Pulmonary Venous Return), so he wasn’t born with a medical emergency that required immediate heart surgery.  TAPVR (the T is for Total) may need attention soon after your daughter is born.

The Cove Point Foundation website has a good description of TAPVR and illustrations that help you to visualize how this will be corrected.  To read more about this condition, click here and follow through sections 1-6.

Blessings to your family.

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.

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.

My name is Delaney, and I’m 14 years old. My brother, Grant, who is a twin, has Mitochondrial Disease.  For 2 years, I’ve watched my brother get sick, and I couldn’t do anything to help him. I couldn’t really talk to my friends about it because none of them have ever heard about Mito, and I hated going through the explanation every time. Even in school, we spent a week talking about what Mitochondria do, but the teacher had never heard of Mitochondrial Disease.

I read about a contest through the UMDF about spreading awareness.  It made me start thinking about what I could do, and my Aunt gave me an idea.  I decided to start a Facebook page to explain Mito in a way I could understand it.  It was something I could tell the people I know to read so I didn’t have to keep explaining it.  I decided not to enter the contest, but I am going to keep the page growing as long as I can.

I started by posting the link and asking other people to do the same. In one week, I had over 6000 people like the page. That means 6000 people might have learned something about Mito. I’m asking for your help to keep the page growing. All it takes is sharing the page with others.

I would love to have any suggestions for ways that I can get more people to view the site.

This is a Channel 8 news report done about the page:

http://www.wfaa.com/news/health/Teen-raising-profile-of-little-known-disease-128652233.html

Here is the page:

Http://www.Facebook.com/wishgrantedproject

Please view the Facebook site on a regular computer, because it doesn’t show up right on a cellphone.

Thank you,

Delaney Watkins

“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!