We began looking for a surgeon just after Gina turned 15 in March 1997. Although by this time she was already beginning to feel discomfort during long walks or carrying loads, she still could still manage a fairy normal lifestyle. The first doctor we talked to admitted his procedure was really only suitable for mild PE. He used no internal support -- and by then we knew that Gina's condition was severe enough to need that. While he didn't know of any other doctors who could do the operation, he did suggest that we get some heart and lung function tests done in the meantime, as it was likely that any surgeon we did find would ask for them.

We followed his advice and got the following tests done, and also got copies of the results to take with us in our search:

Gina's heart and lung function test results were all "within normal limits". The few things felt worth an extra brief comment on were considered no cause for further investigation. These included "trivial pulmonary regurgitation" in the echocardiogram; an "isolated find of an elevated residual volume" in the lung function test; and "some movement artifact" seen during the treadmill test.

Looking back, I wish we had also known to ask that the "index" of ribcage shape be measured -- the antero-posterior (front-to-back) and transverse (side-to-side) distances in the ribcage, which can be taken during magnetic resonance imaging (a CT scan). Dr. Haller and his colleagues set up a CT index against which to measure the severity of PE. He determined the index figure by dividing the broad transverse diameter by the abnormally narrowed anteroposterior diameter -- and the greater the depression, the larger the resulting index number. It's felt that any index greater than 3.25 indicates severe pectus requiring surgery.

We finally found a surgeon who was experienced in performing the traditional PE corrective surgery. Pediatric surgeon Keith Stokes is based at the Royal Children's Hospital in Melbourne, Victoria, around 1700 km from where we live. Luckily, Gina's dad lives in that city, so we had a base from which to make the several pre-op visits, and a place to stay once she was discharged from hospital. Armed with her test results and a list of questions I made up, Gina and her dad saw Mr. Stokes for the first time in mid-1997. We felt that the method he used was what we wanted.

Although the Australian public health system would in fact cover all costs for public patients having surgery in a public hospital -- doctor, anaesthesiology, nursing, room, etc -- if you want or need a particular surgeon (rather than whoever happens to be available), you need to have private hospital insurance. So, we next took out private hospital insurance to cover this. With "pre-existing conditions" however, there is a 12-month waiting period before you can make any claims -- so we knew that the earliest we could schedule the operation was mid-1998. That felt like a long wait, but we put it to use gathering still more information on PE correction.

During this waiting-year, Gina's tolerance of exertion got rapidly worse. By the time of the op, she'd have days when she couldn't walk down the block without her chest aching, and having to stop several minutes to rest -- interspersed with days when she could handle several hours walking. Her tolerance seemed affected by the weather -- much worse in heat or damp cold, best in mild dry conditions. I often wonder what those tests would have shown if they'd been done just before the operation!

We made one final pre-op visit to talk with Mr. Stokes a month before surgery. I asked about blood loss during the procedure and learned it might be as much as 300ml but didn't usually require replacing. We wanted to be prepared however but didn't like the idea of using pooled blood. Mr. Stokes helped us arrange with the local Red Cross Blood Bank for Gina to donate some of her own blood in advance, called an "autologous" donation. It's kept as whole blood, lasts around a month, and was stored there in Melbourne, marked for her use. A couple weeks later, after her body had replaced what had been donated, she gave a second sample, which was sent down for storage with the first one. Close to the surgery date, we reminded the Hospital that the two samples were available. As it turned out, Gina lost just the 300 ml and didn't need extra blood.