William was so fascinated with the stethoscope, he insisted on listening to his bunny Bobo’s heart.

Big Brother Martin kept a close eye on his brother after surgery.

William felt pretty good by his fifth day out. He was ready to go home!

William was so glad to get home and get back to being a rambunctious toddler!

William, at right, with his brother Martin

William, with his usual expression of joy

William, 3 weeks old

William was born March 22, 2004. He was four days late, and we were so excited when I finally went into labor. I had the VBAC I’d hoped for, and William was a beautiful baby, weighing a normal and hearty 7 lbs, 13 oz. But he had a difficult transition at birth. He arrived pale, gray, cold and in respiratory distress. After a few hours in the NICU, though, he was doing well, and spent that first night in my room with me. He looked absolutely perfect.

At a day old, William was diagnosed with laryngomalacia, stridor and a malformed lingual frenum. An ENT snipped the frenum back to the part of the tongue where it normally stops, and his laryngomalacia and stridor resolved themselves within six months.

But in his first year, William was almost always sick, and suffered such a strange conglomeration of symptoms — symptoms that his former pediatricians would only look at individually, despite my pleas that they look at the symptoms and William’s health history in general, in total, as possibly one interrelated health problem.

In the first 11 months, William had: the difficult transition at birth; laryngomalacia, stridor and a malformed lingual frenum; gastroesophageal reflux; extremely bad eczema; plagiocephaly and torticollis because he refused to sleep on his right side; a heart murmur; asthma; failure to thrive; recurrent respiratory infections, including pneumonia; and rotavirus.

In March 2005, during his hospitalization for rotavirus (he was first hospitalized at 8 months old for pneumonia), a pediatric radiologist noticed an anomaly in William’s lungs through X-ray (there is an inequality in the size and function of his lungs).

That ultimately led to a CT scan of William’s chest, and — finally! — a correct diagnosis of Scimitar Syndrome/partial anomalous pulmonary venous return. It is a diagnosis that our city’s only local pediatric cardiologist missed – not just once, but twice!

During those first 11 months, we “fired” William’s first pediatricians and the pediatric cardiologist. We now have a wonderful new pediatrician and we see the excellent team of pulmonologists and cardiologists at Shands Children’s Hospital/University of Florida Congenital Heart Center in Gainesville, Florida.

We thank God for that pediatric radiologist, and our current pediatrician, who really didn’t have to do that chest X-ray to begin with. (He was simply being cautious and aggressive in treating William’s illness.)

William is scheduled to have open-heart surgery this summer to repair his CHD. Since we’ve moved to our new pediatrician and begun seeing Shands’ pulmonologists and cardiologists, William has done well.

He is still underweight (his weight doesn’t even register on standard growth charts), but despite all his illnesses and ordeals, William is a bubbly, exuberant, happy, intelligent, extremely active, 2-year-old bundle of joy. To look at him, you would never know anything was awry.

He and his older brother, Martin, are a beautiful pair. I’m convinced God purposely chose Martin to be William’s brother. He knew William was not going to have it easy, and God knew that no other brother in the world could possibly love William more, take care of and protect him better, and play with and have more fun with William than he does.

We are truly blessed to have William and Martin in our lives, and blessed to have finally found the excellent care and treatment William needs to lead a healthy, happy life.

August 2006 Update

In late June 2006, William had open-heart surgery to repair his partial anomalous pulmonary venous return/Scimitar Syndrome. His surgery was done at Shands Children’s Hospital/University of Florida Congenital Heart Center, in Gainesville, Florida.

Dr. Mark Bleiweis, chief of pediatric cardiothoracic surgery, performed the operation. Because William’s left atrium was small, Dr. Bleiweis created a baffle between the atria, rather than actually moving the veins. With the hole between the atria, William’s blood now flows into the left atrium where it belongs. William spent five days in the pediatric intensive care unit at Shands, and six weeks at home recovering.

William has had a phenomenal recovery. His appetite has increased, and he is slowly gaining weight (instead of being below the growth chart, he’s now hovering around the 3rd percentile). His lips stay pink when he swims and bathes. He’s more energetic than ever, and doesn’t need to sit and rest like he did before. Yet there’s also a wonderful sense of calm and peace about him that wasn’t there before.

The only thing our surgeon noted during the operation was that William had some lesions on one of his lungs, mostly likely caused by his repeated and prolonged respiratory infections as an infant. We will continue to have to be especially watchful when William gets colds or the flu, but otherwise, Dr. Bleiweis said, William should do very, very well.

During our second post-op appointment, which was about four weeks after William's surgery, our pediatric cardiologist, Dr. Jay Fricker, who is chief of pediatric cardiology at Shands, said William looked great, and that he would see us in a year. That was the best news we’d ever heard!

We attribute William’s great recovery to early intervention (many kids with PAPVR do not have their hearts repaired until they are at least 4 years old, and sometimes much older). We also attribute his well-being to an attentive and thorough cardiologist; an excellent, caring surgeon; and outstanding hospital and post-op care.

My husband and I had heard and read so many sad and difficult stories. We are so thankful and feel so blessed that William’s surgery and recovery have gone better than we could ever have imagined. We feel reassured now that our boys will have a long life together.