A moment that changed me: a rare condition left me fighting to breathe – and repaired my marriage

The ear, nose and throat consultant sits at his computer reviewing the footage of my laryngoscopy – a camera on a wire pushed up my nostril and down my throat. I sit with my hands in my lap. ​​The wait is terrible. I thought I had experienced various forms of “desperate” in my life but now I know what it truly means. If it turns out he can’t help, if he can’t tell me anything, then I will have to continue in this version of hell where tying my shoelaces or walking and talking leaves me gasping, starved for breath. And the hell isn’t even the extreme exhaustion, the incapacitation or the loss of the things I might yet have done as a healthy 40-year-old woman. Hell is knowing I, my body, is letting down my beloved 16-month-old son. I cannot bear it.

Then, the consultant waves me over to his computer. On the screen is a video of my trachea. The film is faintly obscene, my vocal cords pale and pulsating above the fleshy windpipe. Of course, even I know it shouldn’t be fleshy: there should be strong rings of cartilage, but mine is overgrown with scar tissue.

Finally, he turns to me and gives me an answer. I have idiopathic subglottic stenosis, a rare disease affecting about 1 in 400,000 people, especially women aged between 35 and 45. My windpipe has narrowed to 6mm. There is a major surgery available, he says, a resection, involving cutting out the affected area and, sometimes, reconstructing it with a piece of rib. When he tells me he would want to incorporate a temporary tracheostomy breathing tube, my composure slips. I bring my hand protectively to the soft skin of my neck: “Oh. I really don’t want that.”

“Yes, but it’s better than suffocating.”

We decide they will do a smaller, interim surgery first, using a laser to cut away the scar tissue, a surgical balloon to dilate the windpipe. He is pragmatic. “This surgery will be temporary. Maybe you’ll get a few months of good breathing, maybe more. It’s …”

“… a Band-Aid. I understand. I don’t mind. I just need to look after my baby.”

“Well, you need it immediately. You know, if you get a respiratory infection it could …”

We both say it at once.

“Kill you.”

“Kill me.”

This moment has been two years in the making. When I got pregnant I assumed my constant difficulty breathing would be fixed when I no longer had a giant foetus playing Twister in my uterus. Then I assumed it was just the rigours of sleep deprivation and carrying extra baby weight. Finally, when I could no longer climb a flight of stairs, I went to a doctor, who told me, conclusively, that it was asthma. Both the illness and the appointments escalated in the next six months: a battery of breathing and blood tests, an inhaler that made me worse, reflux medicine that made me so violently ill my husband begged me to go to A&E (I did not).

An ear, nose and throat (ENT) doctor misdiagnosed me with an extremely rare condition called tracheomalacia – so for two weeks I believed I would spend the rest of my life wheeling around an oxygen tank. Another ENT told me that, in fact, I had a tumour in my windpipe. Then there were the biopsies, CT scans and lung X-rays, all done in different clinics across Prague, where I live, and navigated in my broken Czech.

This is not unusual. What I have is so rare most people are initially misdiagnosed. Indeed, it’s a credit to the excellent professionals in the Czech healthcare system that I was diagnosed within months, and not years or even decades like so many others.

Finally, I got an appointment with this ENT consultant, one of the best in the country. But the earliest he could see me was in three months, and all the while my breathing, my exhaustion, got worse. For the hour a day I was able to be out of bed, I prioritised bringing whatever energy and joy I could to my son. Then I retreated to bed to write when I could. If I did not move at all, then I could stay awake and work for 40-minute stretches at a time.

My childhood, which could be summarised politely as poor and traumatic, has given me extraordinary gifts in resilience, but this final blow, the idea this might be my life, and my son’s and husband’s life, too, was almost too much to bear. We had been through an immigration, a pandemic pregnancy and the beautiful-brutal first parenting year and, although my husband is as kind as anyone could wish for – the strain on our relationship was becoming overwhelming. One night, I said it would be better if I wasn’t here at all, and that same night, in desperation, I emailed the consultant, begging him to see me earlier so I could “be at full strength to care for my child”.

Back in the consulting room, it isn’t a surprise to hear that my condition, idiopathic subglottic stenosis, could have killed me. I have been dimly aware of, and ignoring, that close-to-death feeling for months now. But hearing him say it is validating. I am suddenly calm. It’s not in my hands any more. Here I am with a doctor, and this doctor will not let me die. Indeed, he might even make me better.



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