Living a Life with Purpose: Jenn Hooper

One of the things that has been really incredible over the last few years, is meeting people (either in person or virtually, as the case may be) who are truly living their lives with purpose. Living their lives beyond themselves and taking their own experiences to help others. The sort of people who are living the kind of life that is remarkable and inspirational, the kind of life that is humanity at its best.

Jenn Hooper, Charley's mom, the founder of the Action to Improve Maternity in New Zealand is a remarkable woman (also on Facebook). As a result of lapses in care while she was pregnant and delivering Charley, her daughter was born profoundly disabled. A heartbreaking tragedy - Jenn and her family were failed by New Zealand's maternity care system and her daughter paid the price and faces a lifetime of disability. The kind of situation that is overwhelming and crushing - that destroys whatever expectations a person has about how life should be. What is remarkable is how Jenn has taken the reality of her life, as it is, with what has happened to her daughter - and through Action to Improve Maternity New Zealand has tirelessly worked so that other families might be spared the same outcome and so that other families who are failed by the system and facing the prospect of raising profoundly disabled children have the support they need.

Jenn is also an amazing mom, Charley, due to her disabilities lacks core stability. As a result, Jenn created a brace for her daughter, the "Charley Wrap" and in doing so made a product that helps other children. It is clear, that Charley is truly loved, and that Jenn does what she can to make Charley's life as best as possible, but also seeks to make the lives of others better, in whatever ways she can.

Jenn and her family - her husband, and her two younger sons - spend their winters (as they are in New Zealand, winter is June, July, August) in Bali. While they are in Bali - they employ a nanny to assist with Charley and the baby (Jenn recently gave birth to her youngest son). Once again, Jenn is seeking to help someone else. This morning Jenn made the following Facebook post:

Sulikah is Charley's much loved nanny while we are in Bali. We have known her and her family for a good few years now after meeting her as she did her normal daily job of collecting bottles and cans from the rubbish tips and bushes along the beach and roads near our rented home. She needs to collect 100 small water bottles to make 60c and 60 cans to make $1. They have nothing, and ask for nothing, but always manage smiles and love towards us and everyone they encounter.

The land their current house is on has been sold and they now have 3 weeks to get out. The landlord has already started demolishing it. Sulikah and her husband now sleep in their Warung (shop) at the front - their heads are about 3 meters from the main bypass traffic. They also don't have beds. They sleep on bamboo mats directly on the broken concrete floor.

They have worked hard in the 10 months since we were here last and have secured rent on another piece of land for 10 years. It came with the very beginning foundations of a small house, which Hasan (never having built anything before) is making into their new home. He's doing it alone because they have no money to pay for labourers.

My mission right now is to gather as much money as I can - even if that means to just keep enough materials coming in so that Hasan can keep working on it.

Please look through the pics and read the comments on each one and consider what life must be like for them. Then consider giving a little (or a lot) and help me to help secure their home and livelihood for the next decade - they so deserve it.

If possible, I'm aiming at raising a few thousand dollars. It may mean that you go without a cup of coffee next time you're at Wild Bean. It may mean a dinner of beans on toast instead of steak one night this week. Or it could mean a day's pay goes to them instead of saving for those extras this Christmas. You might consider asking at your workplaces or through your church groups - every little bit helps.

Donations can be paid into my PayPal account - jennmark@slingshot.co.nz - or directly into my NZ bank - 12-3278-0004747-00 - and I will get it changed to Rupiah.

You can't change the world, but you can change THEIR world. And God knows they need it.

Thanks for reading

Alhamdulillah

I wish Jenn the best on her mission to improve the life of Sulikah and her family. Jenn is living a life with purpose, and demonstrating that doing so can make the world a better place.

No Longer Funny, the Stereotypical CS by Choice Mom - "Baby City" book review

Recently, I was asked to review a book Baby City, written by Dr. Frieda McFadden (previous books include The Devil Wears Scrubs, Suicide Med and who blogs at www.doccartoon.blogspot.com) and Dr. Kelley Stoddard. I will admit, that I only read about 150 pages of the book – for reasons unknown to me my electronic copy became unavailable the other day, as such my comments will be limited to the portions of the book I read (but if/when I manage to find my e-copy I likely will read the rest of it). I will also admit that I tend to stay away from books/movies that include portrayals of childbirth – as I know that I am sensitive to those circumstances. It is fiction, and as such personalities and situations are exaggerated –in general , this book is in line with other medical fictions that have a comedy bend to them (ie. Popular sitcoms The Mindy Project, and Scrubs come to mind).

The book follows an OBGYN junior resident – Dr. McCoy and her colleagues at a maternity ward in a New York city hospital. One of the first “cases” Dr. McCoy and her team handle is a patient who is dubbed “The Princess”. I know that the personalities and situations are exaggerated, however, I could not help feeling really offended by the portrayal of this patient and her care. “The Princess” is a mother who has requested a primary elective caesarean delivery – or a maternal request caesarean. Sadly, every harmful stereotype about maternal request mothers is used to portray “The Princess”. “The Princess” is impeccably groomed. “The Princess” is absorbed by her iPhone and appears to be self-centred, asking for her caesarean to be performed at 37 weeks because she is itchy and fears stretch marks (note, ideally, unless there are good medical reasons for an early elective caesarean, waiting until 39 weeks reduces the risk to the infant). “The Princess” has specified how long and where she wants the caesarean to be done by drawing on her body with a sharpie. She is portrayed as controlling, and at the same time is patronised in the course of her care. Dr. McCoy is critical of the high caesarean rate that the doctor who is providing care to “The Princess” has – but admits that the patients love him. Ultimately, without talking to “The Princess” during the surgery, the doctor extends the line the patient has drawn by an inch on either side – and “The Princess” is portrayed as being completely ignorant of the change after the fact.

I found myself, having to remind myself, that this is a work of popular fiction and to cut it some slack. That portraying maternal request moms as they really are, is not really funny – and that while I take the issues of patient care and maternal request CS very seriously, that there is no obligation for others to do the same. But. But how popular media portrays childbirth and motherhood is part of the problem. How this mom was portrayed in this book is part of the problem. I was disappointed that Dr. McCoy did not make an effort to connect with this mom – to really understand her, to understand the real reasons for her medical choice and to engage in a conversation about the real risks and benefits of the choices that were being made. I was disappointed that Dr. McCoy failed to address the real risks to the baby of an early elective caesarean – namely respiratory problems, and chose to patronise the patient by offering a cream that might reduce the risk of stretch marks. I was disappointed when without so much as a word – the caesarean incision line was extended by the doctor doing the surgery.

The thing is real caesarean by choice moms, are not this stereotype. They are moms who are truly worried about 3rd and 4th degree tears, urinary and fecal incontinence. They are moms who are worried about brain injuries to their children. They are moms who have survived birth trauma. They are moms who have survived sexual assault. They are moms who are educated and reasonable and who want patient centered care where their role as medical decision makers and partners in their own care is respected. They are also moms who are stigmatized and who have an incredibly hard time finding care providers who are willing to work with them to meet their needs. They are moms who do not deserve being caricatured by a stereotype that perpetuates all of the myths about them.

The thing is, had the book taken a slightly different slant, I might have enjoyed it – it was an easy read and the kind of sitcom that I usually find enjoyable. Instead – I was left feeling like popular media will never move past the stereotype of caesarean by choice moms. That an opportunity to portray the CS mom by choice as a likeable character was once again forgone in favour of the cheap shots at who this mom is and perpetuation of all the harmful stereotypes about her; the stereotypes about CS by choice moms that make being a real CS by choice mom a really hard slog for so many women.

I appreciated the opportunity to review the book – and thank Frieda McFadden for providing me a copy to review. I wanted to like it, I just found myself unable to like it and unable to have much more than loathing for the protagonist, Dr. McCoy. The one thing, I really, truly do like about the book is that a share of the proceeds are going to a charity that supports fistula care.