Conway

Conway was born on March 3, 2007 at 2pm. He weighed 9 lbs. 2 oz. and was 21.5 inches long. His parents are Erin & Greg, and he has two older sisters, Celeste (6) and Mary Kathleen (3). Erin's pregnancy was uneventful. The birth went smoothly and Conway looked as healthy as can be. About four hours after the delivery a nurse practitioner let us know that Conway had a heart murmur. Conway's pediatrician said this was not uncommon and most murmurs went away after 24 hours. Well, a day later the murmur was still there. The doctor was still confident, saying it was probably a small hole in Conway's heart and would most likely heal itself over time. About 2 hours before Erin and Conway were to be released from the hospital, the doctor phoned Erin and said Conway potentially had a surgical condition and they could not go home. Dad rushed from work to the hospital just in time to join in on an echocardiogram. Mom was already there along with about four other staff and Connie's godfather, Uncle Terry. No one told us anything except that the cardiologist on call would be here soon to speak with us. The cardiologist arrived about 10 minutes after the echo ended. He asked us to please wait while he went into another room to review the film. Another 10 minutes later he came back and asked us to sit down and he'd draw us some pictures to illustrate the problem. As mom sat crying and dad listened nervously he explained to us that Conway had a very rare heart condition called ccTGA (Congenitally Corrected Transposition of the Great Arteries). It is also called L-TGA. A good explanation can be found at http://www.mayoclinic.org/corrected-transposition-great-arteries.  In addition to the ccTGA, Conway has a large hole between the two lower heart chambers, called a ventricular septal defect (VSD). About 80% of people with ccTGA have a VSD accompanying the defect.

To make a long story short, Conway needed surgery. The very technically challenging "Double Switch" operation was performed just before Connie turned six months old.  They needed him to be bigger in order to be able to handle a lengthy time on bypass. It involved 3 separate procedures: 1. Close the VSD. 2. Switch the major arteries. 3. Build a bridge between the two top chambers of the heart. The cardiologist says that in the hands of a skilled surgeon Conway has a 90% chance to survive the operation. While Erin and I were overjoyed at the odds, the cardiologist says that in his profession those odds are not so great.

After the repair. . .where are we now? Conway has undergone two heart surgeries. One repair — the Rastelli-Senning Double Switch, VSD closure, sub-pulmonic resection in 8/07—and one for the pacemaker implant (9/07) because he developed complete surgical heart block. Since the repair, his new cardiac diagnoses are Complete Heart Block (V-Paced), Severe Neo-Aortic Insufficiency, Mild to Moderate RV-PA Conduit Stenosis and two small, residual Ventricular Septal Defects (updated 4/08—the leaks in the mitral and tricuspid valves are mild; moderate stenosis on branch pulmonary arteries). Conway underwent unsuccessful balloon angioplasty on 4/15/08 and the team decided not to place a stent at this time. His aortic insufficiency has improved to mild to moderate.

During the second night post-op, Conway suffered a grand mal seizure.  The doctors couldn't give us a good prognosis until after he was weaned off of pain meds.  He appeared to be neurologically impaired.  The PT said he had Sensory Integration Dysfunction, the neurologists said he was probably cortically blind.  No one really knew what was going on, but everyone told us how plastic kids' brains are and how they can redo connections and pathways in the brain.  Sure enough, our boy made a full recovery cognitively.  He did get glasses about 10 months after surgery to correct far sightedness and astigmatism, but the ophthalmologist says it is unrelated to his medical history.

Conway will have future surgeries to replace the conduit several times as he grows. He will also undergo surgery to replace the pacemaker approximately every five years. When he outgrows the pacemaker lead wires they will have to be replaced as well. Physically he is diagnosed as Hypotonic. As a result of such a long hospitalization, he is now very weak. He receives physical therapy services through First Steps of Missouri. He does not eat orally. He is fed through a tube in his nose called an NG tube. He is working with an occupational therapist to regain oral motor skills to get him eating again and tolerating different things in his mouth. He now vomits many times every day and has reflux, aggravated by the NG tube. The alternative to the NG tube is placing a surgical G tube directly into his stomach. Normally a simple procedure, for him it would be rather complicated because his pacemaker blocks the access to his stomach.

Conway is a true miracle and we are so blessed to have him in our lives.  We have learned so much about love and life and faith and hope because of him.

May 2007 Update

Conway is eating orally now and takes all meals by mouth! No more tube after 8 long months! He is crawling and cruising along furniture while holding on.