Gina's rib cage and chest musculature appeared completely normal at birth. She had no illness until she was about 2 months old and was diagnosed with bronchiolitis, infant bronchitis. As can happen in tiny babies, the congestion made breathing harder, and in trying to get enough air through the blocked passages, the spaces between the ribs were retracted. She didn't seem very ill, she wasn't feverish , irritable or unable to feed. When I noticed the retraction I took her to the Children's Hospital. She and I stayed in hospital overnight for observation but she had no treatment. I don't recall noticing that her breastbone was depressed at this time, but not long afterward it became obvious.

During her childhood, the depression was quite deep-looking but central, and her ribcage appeared symmetrical. Her chest musculature has always seemed normal. Throughout childhood, from age 13 months until around age 9 years, Gina experienced bouts of croup. Her first attack of croup happened when we were camping in the bush, and we ended up taking her to hospital where she spent the night in an oxygen tent. Later attacks weren't so bad and were resolved by using a vaporiser.

One interesting abstract on PE made me wonder about those bouts of croup. In the reported case, a little boy with PE also had chronic respiratory congestion and "colds", which were eventually treated by taking out his swollen tonsils and adenoids. On seeing him 4 years later, the doctors found his PE had disappeared! And they make the obvious suggestion that in many cases PE may be the result of chronic upper airway obstruction.

In Gina's case, while the bronchiolitis that first brought on her PE wasn't the result of a chronic obstruction, once her breastbone was depressed it may well have made clearing the air passages beneath the deep depression difficult -- so that even slight colds resulted in croup, and any congestion that did occur due to colds would linger because of the difficulty of clearing the passages. This would have meant that she spent a lot of time having to work harder to breathe, and that situation would have maintained the PE.

Throughout her childhood the doctors who noticed her PE said not to worry, kids often "outgrow it". After reading that abstract, it's clear that PE might resolve itself IF any obstructions are removed and IF the obstruction didn't actually involve the depressed breastbone itself. That didn't happen for Gina. She was not a child prone to constant respiratory illness, or chronically congested -- but her PE never improved.

Until about age 12, Gina had few symptoms attributable to her PE -- possibly apart from her tendency to get croup. She has a good measure of self-esteem and as a child wasn't particularly bothered by her "dent". As she approached puberty however, the depression became more asymmetrical, and gradually she began to experience the symptoms so many others with moderate and severe PE have described as happening when they exerted themselves: shortness of breath, heart pounding painfully against her breastbone, dizziness, faintness, tingling in lips, fingers and toes and even midriff. She'd break out in a sweat and get red in the face -- but her lips would go very pale.

At first this happened only on uphill walking or when she walked carrying a modest load. It was worse in certain types of weather, namely very hot and humid, or very cold. The struggle to breathe during these times made her throat and neck ache inside. Her nails became pale, especially after she'd been asleep all night, and she looked anemic -- even though a blood test at age 15 was normal.

Eventually she was so affected that by age 16 she was virtually an invalid, unable to walk down the street without rest stops. Finally, even sudden movements, like twisting around in her chair, would bring on palpitations or faintness. As others with PE have also found, if she rested for several minutes, the symptoms eased a lot -- but they'd return if she started moving around again.

Gina's depressed sternum seemed to be interfering with the blood flow between heart and lungs (hence the tingling and going pale when she exerted herself), so around the time she turned 15, she began taking regular doses of vitamin E to help her blood carry as much oxygen as possible. (Vitamin E protects red blood cells from rupture, helps iron absorption and hemoglobin production.) She took two capsules a day, each of 250 IU of natural vitamin E, d-alpha tocopherol. Sure enough, her tolerance for physical activity improved, as did her nail and lip colour. And she really noticed her stamina drop on the few days she forgot to take it.

But by a year later, at 16, even the vitamin E wasn't enough to let her lead a normally active life. Even eating had become a minefield! Pulse rate increases as the heart speeds up in reaction to certain foods that our bodies find difficult to handle. This can be dramatic with foods we are "allergic to", even bringing on nausea. But many of the foods we eat daily cause milder pulse increases -- which most of us are not aware of. If your heart is beating a few millimeters away from your breastbone however, even a mild increase in beat is going to feel uncomfortable and be noticed. This began to happen to Gina much of the time she ate.

Thanks to an old US children's health book I'd had for years, we knew that Gina's condition was commonly called "funnel chest", and even that severe cases could be treated by surgery! But until she began to become so badly affected in her mid-teens, Gina really had not considered having surgery. We connected to the Internet a few months before she turned 15, and idle browsing under "funnel chest" brought up "Pectus excavatum" -- and led us to Lucas Willering's PE Home Page! To see his photos, read of others also affected, and especially to see that many had really positive outlooks despite the PE -- it was all just great!

We were immediately interested in a letter from Theresa, a young American woman who was about to undergo corrective surgery for her relatively mild PE. She'd obviously been researching the whole thing, so we fired off an e-mail to her. When she replied shortly afterwards, we were amazed and very impressed to find that she had just had the op three weeks before! So began a correspondence that ran right through Theresa's recovery, bar removal, and afterwards. Throughout it all, she was gratifyingly frank about everything she experienced, and we learned a great deal.

But the greatest gift in her sharing her story with us was her unwavering enthusiasm for the whole experience! Her letters were bubbling with the thrill she felt at the improvement, both in appearance and breathing. Many times she affirmed the result was definitely worth the pain and all you had to go through to get there. Her positive attitude about her experience was a huge factor in our decision that Gina should follow the same path.

Theresa's satisfaction with the outcome of the operation she had was in tune with what I'd been finding online in the PubMed abstracts. The majority of these medical summaries dealt with the "traditional approach" to PE repair, with considerable cutting and reshaping of the breastbone, rib cartilages and ribs, and placement of a (usually) temporary support bar beneath the sternum during the healing period. It was felt this gave the best result when the PE was moderate to severe, asymmetrical, and especially in older teens and adults.

Not long afterwards online we met Cheryl, another great source of enthusiasm and information about PE. PE in her own family has motivated her to investigate thoroughly every option she encounters -- and to the gratitude of a huge network of other interested folks, she has shared it all via e-mail. It was through Cheryl that I learned of Dr. Leonard's method using an external brace, of Dr. Haje's non-surgical possibility, and later of Dr. Nuss's approach. She also sent me Dr. Fonkalsrud's brochure -- and after reading that, we knew that's what we needed for Gina.

We would have travelled to the US if necessary (we have family there), but I hoped that since we were looking for a surgeon who used the traditional method of correction, we might find one in Australia. It took some looking, that's for sure -- but we did find a surgeon experienced in just the procedure we wanted -- Mr. Keith Stokes, at Royal Children's Hospital in Melbourne. (Surgeons are called "Mr." downunder!) Melbourne is the capital of the Aussie state of Victoria, and is over 1700 km from where we live! But it's sure a lot closer to home than the US :)

We began our discussions about possible corrective surgery with Mr. Stokes at about the same time we took out private hospital insurance. There's a 12 month long waiting period before being able to claim for any treatment of a "pre-existing illness", so we knew we'd have at least a year's wait until the operation could take place. The insurance ensured she had her surgeon of choice in the hospital of his choice, something we wanted to be sure of given the particular experience needed for this operation. The insurance, along with our national health system, covered just about every cost. If we had decided to rely entirely on our public health system, given that the operation ended up being done in a public hospital, the entire cost would have been covered anyway.