It's a true story written by Julia Hollander, the Mum of a profoundly disabled little girl called Imogen, her second child. Imogen's disability resulted from a severe hypoxic brain injury and a traumatic birth. It's maybe not the best thing for me to be reading right now (although I am taking comfort in the fact that my hospital is only a few minutes' drive from my house). Julia had a long trip from home to a midwifery unit and then on to a larger hospital before she was able to access specialist medical care due to the emergency involved in Imogen's birth.
This is a disturbing book to read, and I think it would be even if the reader wasn't pregnant like me. As a Mum, I found it so unsettling on the first read (perhaps partly because Imogen is on the list of girl's names we like?) that I am reading it again to see if my feelings are any different this time around.
The story revolves around Julia's decision to place 5 month old baby Imogen into full time foster care because she was unable to cope with the demands of caring for a severely disabled infant who took several hours to feed, screamed constantly, and was having ongoing epileptic seizure activity.
A few years ago, I did some research for a postgraduate degree on the experiences of parents caring for children with disabilities. None of them described the reactions that Julia did in this book, so perhaps that's another reason why I am feeling a little disturbed as I'm reading it. And the "professional" side of me keeps saying things like "but they could have put in a feeding tube to make the feeds easier" or "if they'd given it a bit longer, the epilepsy meds would have stabilised the seizures and she might have become more settled."
After I finished reading this book for the first time, as a parent, I thought Julia had made a very selfish decision. She didn't have the "normal" baby she wanted so she gave her up (and then subsequently went on to have another normal child). Second time around, I'm not feeling quite so judgemental. I don't have experience of my own in this kind of thing to fall back upon, so I really don't know what it would be like to live this way day in and day out.
But I still feel as though Julia could have given it a little more time to see how things went over a longer time period. And whether accessing some regular respite care earlier might have made any difference. Although it certainly didn't come across as an easy decision that they made. She talks openly about her partner's expressed desire to kill baby Imogen and how this impacted on their relationship as a couple and as a family. And even after Imogen was placed with a foster carer, Julia still had doubts over whether she had made the right choice.
Before I wrote this, I checked online to see if anyone else had reviewed this book. I didn't find much. But I did find a review in an Australian academic journal of all places, the Journal of Paediatrics and Child Health, where the ethics of withholding nutrition from children with profound disabilities and the role of paediatricians in supporting families coping in the aftermath of a traumatic birth and diagnosis of disability were discussed in detail.
This book made me think about the ethical questions around caring for a child with profound disabilities. Although as a Christian, I didn't agree with many of Julia's decisions, her writing is beautifully honest and raw. And it made me realise that while in most cases, the supports we provide as professionals are enough to help families cope, perhaps there are times when it's insufficient.
Worth a read. But probably better to read when not in the last trimester of pregnancy, when birth is at the forefront of my mind.