In the half-light

My third child is six weeks old today.  For almost all of that time he and I have been living in a kind of dim twilight world, half-lit and full of unusual faint noises, as we navigated the Neonatal Intensive Care Unit (NICU) together.  We started out in Level 3, the most acute level of care, travelled across the ward to Level 2 for a few days, and then finally to Level 1, the Parent Infant Nursery.  I was discharged from neighbouring Ward 96 at Day 7, and baby came home late last week.

For those who haven't been to NICU, which will be most people, it's something of a shock, or at least it was to me.  Not only are the lights dim and the noises somewhat muffled, there are medical machines everywhere, including empty incubators cluttering the corridors at times.  Pings and beeps and whooshing noises in the more intensive rooms, rushes of laughing chatter amongst nurses and parents sporadically in others, loud alarms that catch you unawares occasionally.  It's like an old-fashioned library but with a few babies instead of many books.  You expect to be shushed at any moment.

The outcome for our whanau has been good.  Baby (nicknamed Early) decided to come eight weeks ahead of schedule (well seven ahead of mine, but that's a story for another time) and so he needed to cook for a bit longer basically.  The care and support we received astonished me, not just for the medical needs of my child but also for my health and wellbeing, mentally and physically.  I have come away very much wishing that every parent, new or experienced, could access this level of support for a period after birth if they wanted to; a lactation consultant checking in with all the breastfeederers every few days, friendly reminders that you could go eat lunch while a nurse watched over your child, help learning to do what they call "the cares" (take temperature, change nappy, top and tail wash, followed by a tube feed and later on breastfeeds), practical support with bathing these tiny creatures, comfy chairs that you could nap in, social worker and mental health workers available to come and have a chat.

Despite the excellent level of care and support coming home has very much felt like emerging from a long dream; not quite a nightmare, for us anyway, but not the kind of dream you'd really enjoy and lie in bed wishing you could dive back into.  The people who live in the half-light of NICU are of three kinds; exhausted stressed parents spending as many hours as they can at the cot-side while juggling everything else in life, efficient calm medical staff effectively going about their work, visitors who are only in the library to browse a little while and feel very much like interlopers.

There is an odd kind of camaraderie amongst the parents, I found.  Introductions are about baby names, gestation at birth, and how long you've been Here (ie in NICU).  It was days before I found out the name of a neighbouring mother in Level 1, and in the end I worked out the trick is to read their names on the bottles of milk in the fridge - every baby has stacks of sticky labels BABY OF LAST NAME, FIRST NAME that go on everything.  It sometimes felt like I had some extra status because my baby had been in Level 3 (the most acute level of care) and had come earlier than most (at almost 32 weeks).  People are careful not to ask too many questions about the health of the baby; no one wants bad news and there's always someone worse off than you.

I recognised a Level 1 mother by the toenails I had spied through a door in Level 2 - I remembered because they had taken all of my nail polish off before the emergency c-section but she still had hers and I wondered why (because acrylics I found out later).  Four of us in Room 18 bonded over weigh ins and hopes to graduate to the parent room (where you stay overnight with your baby) before going home.  We've arranged to keep in touch.

Now that we are home, and the sunlight comes through the windows in every room, my strongest memory is of the first room Early was in - Room 2 in Level 3.  Warm, dim, quiet.  Ratio of one or two nurses to each baby.  The gentle pings of oxygen saturation alarms.  Sitting in the lazy-boy staring at my impossibly small child through the incubator plastic, too dazed by drugs and the circumstances to do more than pat him from time to time, and sometimes only brave enough to pat the incubator as I dropped off pumped milk.  The incredible kindness of the nurses and staff.  The sense that the baby in the neighbouring room had it much much worse.  Waiting for bad news that didn't come, and feeling lucky and grateful and humbled.

I hope you never have to go to NICU.  I wish I hadn't.  And I am very very glad it exists.

Mother and Baby Support: A Long Time Coming

It’s been a long time coming, but finally the North Island is to get a unit geared toward helping new mothers who face post-natal depression or distress.

Health Minister Tony Ryall announced today an $18.2 million commitment to providing both acute in-patient beds as well as residential beds where the mother and baby can remain together, and Martin Johnston in the Herald did some good reporting on the news in today’s paper.

Lynda Williams, the coordinator of the Maternity Services Consumer Council, told me this commitment is something she and myriad consumer, health and even official organisations have been championing for many many years. She heartily welcomed the news, with a caution: “It’s not enough,” she said, “but let’s start with what we’ve been waiting 20 years for.” Williams emphasises that the new services must be set up in consultation with the consumer groups that have been fighting for it. “We have some clear ideas about how this needs to be done. Preferably it would be better to have a stand-alone unit with other support groups and services around it.”

Despite numerous well-attended meetings, support from experts, lobbying and campaigning, she suspects a crucial impetus for the move were the reports of the Perinatal and Maternal Mortality Review Committees, which in recent years have shown suicide to be the No. 1 cause of maternal death in New Zealand.

As a (this links to a PDF) recent article in O & G Magazine (the magazine of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists) points out, these maternal reviews were only reinstated six years ago, and they show that in the five years to 2010, there were 57 maternal deaths, with the three leading causes listed as suicide (13), pre-existing medical condition (11) and amniotic fluid embolism (9).

The figures and the O&G article also show that overall Māori and Pacific mothers are more likely than NZ European mothers to die in pregnancy or in the first six weeks postpartum. 

The O&G piece notes that there were four deaths by suicide not included in the review figures because they took place more than 42 days (the cut-off to be counted) – though less than a year – after the women gave birth. Those 13 maternal deaths by suicide that were counted break down a bit further like this: 7 occurred during pregnancy and 6 postpartum or post-termination of pregnancy. (O&G reported that: "Eleven of the 13 deaths from suicide were by violent means.")

As well as the proposed new and much-needed mother and baby services for the North Island (there’s already a unit in the South Island), the figures clearly point to the need for support and options for all aspects of reproductive and maternal health care.