Cali Is 7 years Old, She Has Trisomy 18 by Jemima Alexander (UK, mum, blogger, advocate)
Jemima writes about how, following the birth of her daughter Cali, she had to start questioning doctors’ prognoses and blanket statements in a hurry as well as clueing herself up about Edwards syndrome and its related conditions in order to potentially safeguard her daughter’s life.
O
ur dog died this week. Sweet, smelly old Eva. She came to us when we lived in Spain, and we mollycoddled her obsessively in those pre-children times. She quietly observed our lives for eleven years, rarely asking for much and always tolerant when we needed to bury our sad faces in her warm fur or pick her up to waltz joyfully. She was extra sweet when I was pregnant with Cali and uneasy when I first came home from hospital without her. From her basket, she watched the years with Cali unfold and felt all the emotions that tumbled around the house. In the last year or so, Eva would often position herself next to Cali so she could caress her haunches. The day before she died, Eva fractured a bone in her leg. Under anaesthetic, it was discovered that the leg was infested with bone cancer. The vet’s conclusion was that the bone cancer would stop Eva from healing and that nothing more could be done for her. We were asked if she should put Eva down there and then, or if we would like her brought back so we could say goodbye and then have her put down when we were ready. Through sobs, we decided that the best thing for Eva would be for her to slip away whilst under the anaesthetic. This is what happened. I never got to say goodbye. By the time I returned home from work, she was buried in our garden. The next day I realised that I hadn’t thought to question the vet’s prognosis. I’d had complete trust in her experience and integrity. She’d said it was incurable, so it must have been. Cody had asked if there was any point seeking a second opinion, but when she’d said there wasn’t, he’d believed her. I presume we were right to trust her. We didn’t trawl the internet looking for families who’d had the same diagnosis but had found a way of humanely prolonging their dog’s life. Nor did we have a stab at making an alternative diagnosis ourselves. We certainly didn’t wonder if our dog had been a victim of institutionalised discrimination against her breed or condition. And we weren’t left agonising about whether we did enough for her. As I’ve pondered this, I’ve been struck by the ease with which we were able to trust a vet we hardly knew compared to the wariness with which I trust even the best of Cali’s doctors. Until I had a child with Edwards syndrome, I had a high level of confidence in medical professionals. This trust started to corrode on Cali’s eighth day of life when we were told by a consultant neonatologist that any type of resuscitation was inappropriate for our daughter. This announcement was made in spite of the fact that Cali had needed nothing more than a nasogastric tube and some UV lights to ready her for discharge. She was functioning well, breathing and feeding and, at that point, only her heart condition had been detected. It was a potentially severe heart condition but one that wasn’t yet affecting her (and still isn’t) and which was theoretically fixable. So, given this reasonable bill of health, why was there to be a blanket policy not to resuscitate our child? It was because she had Edwards Syndrome.
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