Monday will be an anxious day for this family who requests prayer:
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.
I received this letter from an anxious mom:
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. 
Tags: echocardiogram, EKG, heart surgery, hypoplastic lung, Scimitar Syndrome, spinal fusion
Delaney Watkins is on a mission to educate people about Mitochondrial Disease, the disease her two-year-old brother has. “Would you please consider posting this page on your blog?” she writes. You bet I will, Delaney!
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
Tags: Delaney Watkins, Mitochondrial Disease, Wish Granted Project
In mid-August, Sam wrote requesting prayer for her son, Lucas, who needed surgery to correct Truncus Arteriosis, a rare congenital heart defect. I received an email over the weekend reporting that the surgery went well!
“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!
Tags: congenital heart defect, heart surgery, truncus arteriosus
