In today’s blog I want to cover two things, firstly, what information should be available to prepare women for things not going to plan, in the event they have a term baby with problems, and secondly, how mothers with term babies are dealt with on the NICU, particularly by other parents.
When we are pregnant, we have access to so much more information than our mothers did. We have scans and access to tests that they could only have dreamt of. We have magazines, books, television programmes, and, of course, the internet. A lot of this information isn’t passive, we can ask questions, and get opinions. We have the ability to know so much more about our unborn babies than ever before.
I think sometimes, in books and magazines, that a very rosy, very perfect picture of childbirth is depicted, the dream is on offer, a 40 week pregnancy, a lovely labour, and at the end, a perfect, adorable bundle of joy. Occasionally there are the stories presented of special situations, usually a real life scenario, with before and after pictures, and usually accompanied by a disclaimer stating that these cases are very rare. No one ever wants to feel that this will happen to them.
I talk a lot in this blog about premature babies. Obviously this is my only direct experience of childbirth, having a premature baby. However, during this journey I have met other women who have had difficult times with their babies, and these babies were born at term.
One of my friends felt that she was completely ill prepared for her baby having problems. She had a long, difficult labour at 40 weeks + 3 days. Everything was assessed as being normal and she was sent home, with her baby after delivery. A few days later, her baby stopped breathing, fortunately her mother in law stayed calm, and resuscitated the baby. This mother had to stand by whilst numerous tests were conducted on her baby, many of them invasive. She felt cheated and let down by the books and magazines that never said anything about a term baby perhaps not being mature enough, as it turns out, her baby had severe reflux. So severe that many of the treating doctors assumed that he was, in fact, a premature baby.
I understand, to an extent, the problem that editors, authors and journalists have. No one wants to frighten expectant mothers, and make them feel that there could be problems. I remember, at 24 weeks, buying new speakers for my iPod, DS Lite games and stocking up on magazines and books, because I knew pre eclampsia was on the horizon, and all the books I had read made it sounds like I would get 6 weeks bed rest. I do wish I had been better prepared mentally. I thought the only extremely premature babies were those born as a result of premature labour, or premature rupture of the membranes, or mothers who had been in accidents. I had no idea a caesarean would be performed so early.
The second issue, is that of mothers who find themselves with term babies in the NICU/special care baby unit. I was on our unit for an extremely long time, 10 weeks is a very long time on our unit, most tour of duties last between a couple of days and three weeks.
For many reasons, term babies, or later gestation babies, might come on to the unit. They may have a physical problem not diagnosed in utero, they may have a problem that was known about and the stay is expected (in our unit this didn’t happen so much, as these deliveries would normally take place at a hospital with surgical facilities), they may be struggling with breathing, or temperature regulation, or have severe and persisting jaundice.
As a long term patient, I was a bit of a fixture. I always had a smile and a hug ready for anyone who needed it. I think sometimes, people think I’m stupid. I may, at times, come across like Polyanna, cheerful, happy and ready to see the good in everyone, but I am not dumb, I have ears and eyes.
There were two things I noticed. The first was at times that some mums of term babies felt ashamed talking to me. My baby was very small, Joseph looked like a skinned rat for a lot of our stay, and he did look poorly with all his lines and bits and pieces, but after his first 20 days, he was stable, just small. People would say “but it’s nowhere near as bad as what you’re going through”. But what I used to say is what I still say now, any amount of time in NICU feels 10x longer than time outside. Days drag. And the stress and pain of having a baby that can’t be held, that can’t come home with you is the same, whether the baby is a 27 weeker or a 37 weeker, is 1lb 7oz or 7oz 1lb. It makes not a blind bit of difference. It is not a competition.
However, I heard other mothers being bitchy. Like a large baby didn’t deserve to be in that place. It didn’t help that on our unit it still had the old plaque on the wall “premature baby unit”, which was a historical sign, and whilst nice to have that piece of history, does not help when you’re the mother of a term baby, battling to justify your presence in that place.
I strongly believe that we need to be more open about the possibility of complications, that although we have fancy scans, more ante natal testing available than ever before in medical history, that there are still secrets in the womb that will only be revealed at delivery, or even in the weeks beyond. And that needs to be given in formats that most people have access to, television shows, magazines, and mainstream pregnancy books, not only for those mothers who might be in that position, but for mothers who may find themselves next to those mums in the special care baby unit.
In my dim dark past, I was a card carrying, Evangelical Christian. One of my favourite songs was “brother let me be your servant (now changed to brother, sister let me serve you)
My favourite line of this song is “pray that I might have the grace to help you see this journey through.”
When we are in special care, we are all in the same, dark, scary boat on unchartered waters, often without a map, and with an absent captain. We should be there to help one another, to shine a light, and to steer that boat to safety.