Here is a response from Dr. Sorensen, published on the Advance for OT website at http://occupational-therapy.advanceweb.com/Article/Who-Should-We-Be-Treating-in-EI.aspx
I would like to re-post her comments in full - even though my intent is entirely Fair Use - but I don't want to be squelched by powers who don't like the debate. Go to the link quickly before it disappears. If Dr. Sorensen would like to grant permission I will post her comments in full on this site.
Dr. Sorensen asks that people go to http://www.pediatricservices.com/prof/prof-01.htm which she believes is an article that will 'validate your clinical experiences.' This article quotes several health care professionals who question the life-saving measures and efforts that are afforded to critically ill infants.
For the second time this week I am deeply disappointed in Dr. Sorensen's opinion.
This article is a gross misrepresentation of what happens on a daily basis in neonatal intensive care nurseries. The article suggests that parents who have premature babies secretly wish that they would just die, and that the professionals are forced by the government to provide care that they know is futile, painful, and ultimately cruel. I worked in a neonatal intensive care nursery and this is not what I saw at all.
Rather, I saw parents who were devestated that their child was born early and who desperately did anything they could to stay on bedrest, take prescribed medications, and pray that their baby wouldn't be premature. When their babies were born the parents were terrified at their fragile state and unable to grasp the enormity of what was necessary to keep them alive. They wanted their babies to live and to be healthy.
Doctors and nurses and therapists who love babies and love families did everything they could to provide highly technical and sophisticated care to save lives. They cycled the lights on and off in the nursery, tried to minimize unnecessary stimulation that was damaging to the baby's immature nervous systems, and tried to cluster their care so that the babies were not disturbed more than was needed.
Many premature babies come from at-risk families. Sometimes the baby's mother was a teenager who had taken drugs. The mother would be scared and wouldn't know what to do so the hospital staff worked extra hard to teach the young girl what it would mean to be a parent and how to care for their baby.
Although it was infrequent, sometimes a baby would be too sick and just have too many problems. Doctors and parents conferred. Cases would be referred to the hospital ethics committee. Agonizing decisions would be made by parents. Sometimes parents and hospital staff would hold each other and cry together when a final choice was made to withold treatment.
The article that Dr. Sorensen quotes also states that all these children are a burden to their families and that the burden is worse because of a lack of governmental support. Since the so-called 'Baby Doe' Laws were passed there has also been significant legislation passed to create support networks - in fact the laws that mandated early intervention services were passed after the Baby Doe Laws. Undoubtedly the services to support child development are expensive and I have mentioned previously we do need to use our resources wisely and efficiently - but to say that these children are an incredible burden and that there is no support for families is grossly incorrect.
Rather, parents of premies or of other babies who have developmental problems still love their children. Just like every other parents they want the best for their children and will generally go to any length possible to do whatever their children need. My experience in early intervention is that parents feel blessed with their children - not burdened.
Some families have fewer resources and need more support and education. It is our responsibility as a compassionate society and as compassionate therapists to provide that support - not spread false information about how the children would be better off dead.
Early intervention services are important for children and families. The services are expensive and as responsible professionals we need to advocate for efficiency and conduct research so that we know what methods and service delivery models deliver the best results. Many studies have already been done and every day therapists use this information to provide the most effective and efficient services possible.
Improving delivery systems is always a need and of course it is a frequent topic in my blog. Dr. Sorensen's approach is to solve the problem through amputation - literally throwing out the baby instead of changing the bath water. At any time there will be a sad anecdotal story of an overwhelmed parent who is unable to cope with an overwhelming situation. I suppose it might also be easy to find a professional who feels like Sisyphus after spending long and frustrating days of trying to teach parenting skills to seemingly disinterested teenagers.
The answer to the tired parent and the frustrated professional is usually found the next day after a good sleep. The next day the parent will see the baby smile and reach a little farther and finally be able to play with the toy. The therapist will hear a mother say, "Today you really helped me understand things - thank you for caring and for helping my baby." And at the end of that day, even though there is no knowledge of what the next day will bring, a little bit of hope is created. Maybe it is enough to last just an hour. Maybe it will carry through the whole next day.
But it will be hope. And it will be good. And that is why we work with children and their families.