retinopathy of prematurity.org :
Preemies and their parents get short shrift
in many intensive care nurseries
My own experience with the bonding police came when we brought Edward in for one of his early visits to the follow-up. He had just learned to sit up on his own and my husband and I were eager for him to demonstrate this new skill to the doctor and his staff. We took special pains to reschedule Edwards naps and feeding so that he'd be in peak form at appointment time.
Then we arrived at the clinic only to be shown into an examination room where we waited for an hour. As Ed began to fall apart during this interminable amount of time, my husband and I made frantic attempts to soothe him. It soon occurred to me what was going on.
One of the walls was covered with a mirror which I suspected, correctly it turns out, was a one way window. The doctor and his staff were standing behind it observing our parenting behaviour. The idea infuriated me so much I turned to it and made a rather rude gesture. I was later told by a friend who worked at the hospital that this earned me a very poor grade in appropriate maternal behaviour.
When the doctor finally did show up he didn't even look at Edward, who had rallied and was rolling over and sitting up. Instead, the doctor advised us to seek counselling in order to help us make a better adjustment to parenting our premature child. As we got up to leave he asked us, almost as an afterthought, "Tell me, has Edward come to sitting yet?"
It was clear to us that this man and his staff had no real interest in helping us or in recognizing us as individuals. We eventually switched Edward to a private developmental specialist who provided a refreshing contrast to the doctor at the hospital clinic.
For example, after an hour examining our then hyperactive, volatile child, and after seeing me with a newborn baby strapped to my chest, the doctor asked in genuine amazement, "How on earth do you cope?"
This was a very empowering moment. The doctor was treating me not as a disordered preemie parent, but as a normal, resilient person who was doing her best to cope with a very difficult situation.
All too often in my interviews with mothers I hear that they have been referred to therapy for reporting a problem with their premature baby only to later have it turn out that the child did indeed have a serious organic problem such as gall bladder disease, liver cancer, or cerebral palsy.
I have also found that neonatologists and other physicians are quick to put the blame on parents when the outcomes of their prematurely born children are less than optimal. At one conference, tor instance, I heard a psychologist recommend a "parentectomy" for prematurely born children who were not doing well, despite scoring in the normal range on follow-up examinations.46
He wanted to take these kids, sever them from their "neurotic" parents, and put them all in day care centres. This talk was given, I might add, at a conference on developmental interventions in neonatal care.
The tendency of some professionals to turn parents into patients and to stereotype them and blame them for their childs problems is hardly empowering or conducive to effective parent- professional or parent- child relationships.
For this reason, I was delighted to see Heidi Als's guidelines46 among the conference materials with her exhortations on almost every page to "humanize! Individualize! Personalize!" and to "empower the family and maximize parent collaboration at every step!" and to remember that "the parents are the primary consistent person(s) in the child's life!"
I hope that when you and your colleagues intervene with families you will see them not through the lens of textbook theories but, barring major evidence to the contrary, as basically sane, competent individuals who are going through a very difficult experience, people who can use your expertise but who also deserve your respect.
NICU parents, in my experience, can be resourceful, energetic, and effective advocates not only for their own children, but also for future premature babies and their families. Because of this, it is very important for you to reach out to them.
Because many parents do not have the access to the professional journals in which your work is published, I hope that you will consider writing for the popular press, for parenting magazines such as the one in which Chris Clark found the article on Kangaroo Care that eventually revolutionized care in her unit.
If you would prefer not to write these articles personally, there are a number of skilled parent journalists who would be glad to write them with your help. I would also like to encourage all of you who are not already members to join Parent Care and to come and speak at our conferences.
I want to advocate the formation of parent- professional teams such as the ones currendy working in Colorado to help evaluate and improve the care in hospitals. I further hope you will involve parents in advocating for your research, in helping to design your studies, and in helping to implement your recommendations.
I also strongly urge you to include parents as meaningful participants in future conferences on all aspects of neonatal care. If you do, dont just invite tame, docile parents who can be counted on to rubber- stamp the views of professionals. Invite the parents who are controversial, the ones with the guts to speak out, the ones who used to be referred to therapy as "angry parents" with bonding disorders. These are the people who will ask the provocative questions and get things done, even if it means acting, at times, in ways that professionals feel is "neurotic" or "pushy."
To quote from one of my favourite books on family empowerment, "Our anger is motivated by the extraordinarily strong responsibility parents feel for children ... If professionals really want to encourage strong bonding between parent and child as they claim, they need to tolerate, even encourage, parental neurotic pushiness."47
In conclusion, many parents are deeply concerned, even angry, over the issues raised at this conference.
We would like to see guidelines established and enforced for the humane and safe care of babies in the NICU. We would like to be involved in advocating for and carrying out your research, but we do not believe that absolute proof of a hazard is necessary before steps are taken to initiate safeguards.
We want to be involved in all aspects of neonatal care and follow-up because these are our children. And because we are their parents, we believe that our perspectives can be as valuable to you as yours are to us.
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