Neonatology and the Rights of Families

Letter to a Neonatologist

November 10, 1990

Dr. S. Saigal
Chedoke McMaster Hospital
1200 Main Street N.
Hamilton, Ontario
L8N 3Z5

Dear Doctor:

The purpose of this letter is to express the concerns we have, as parents, with regard to premature babies. We hope that what we have to say will assist you, your colleagues, and the entire neo natal unit staff in the future.

Our son, Daniel Robert Williams, was born at McMaster Medical Center on October 4, 1989. He was 24 weeks gestation and weighed 750 grams.

Daniel had several complications within his first 3 weeks of life. He started out with an Apgar score of 1. He suffered a collapsed lung, a major brain bleed and was treated with phenobarb and dilantin for seizures. He was continually jaundiced from liver disease and had surgery for a PDA ligation. His bowels and kidneys did not function without medication or treatment. He was prescribed antibiotics continuously for numerous unknown infections. Needless to say, he was a very sick baby kept alive by means of aggressive treatment.

Daniel's chance for a normal and healthy life was of utmost importance to us. We feel we were extremely realistic as to what those chances were. As difficult as it was we feel we clearly stated our position at numerous stages to various doctors, nurses, and interns. Firstly, we did not believe in life
at any cost. We felt that there were worse things in life than death. Secondly, quality of life far exceeded life itself in terms of what we hoped for, for our son. We don't think we could have made it any clearer considering we began to express this as early as during the hours of labor.

Daniel has been diagnosed as visually impaired and mentally handicapped and his future is very uncertain.

It has been a year since Daniel's birth and we continue to ask ourselves why our feelings were not considered nor our parental rights respected.

We understand that this is a very high risk area of medicine and not without its difficulties. Anyone who has seen a neo natal unit can appreciate the enormous stress inadvertently placed on the staff. What we do not understand, in Daniel's case, is why such a gamble was taken with his life. Decisions were made that we alone, as a family, will have to live with.

Our position of "enough is enough" was expressed, however, obviously unheard. We put our faith in a system that failed us. We feel Daniel was an enormous medical challenge then and a mere statistic today.

Our family is being torn apart by something that did not have to be. We were willing and able to make the hard decisions. You have no right to make lifelong decisions that affect an entire family without involving that family in the decision process. Your system has lost sight of the perspective that
parents can bring to that decision. As professionals you have the responsibility to supply as much information as possible from medical perspectives. A family unit brings personal and realistic perspectives. A more viable decision will be reached when both perspectives are considered.

The Growth and Development Clinic was a major disappointment for us. We were led to believe that this facility would be of great assistance to us. However, we found it to be nothing more than a data research center. It has been through casual acquaintances that we have been able to finally work with
the appropriate clinics that can address Daniel's needs. We have also been extremely dissatisfied with the receiving of test results. It's difficult enough for Daniel and us to endure these lengthy test procedures without having to wait patiently and still not get the results. Please understand that the extra waiting time can be unbearable.

One other area worth mentioning deals with the "system" which Daniel is now a part of. For most of our lives we will be dealing with social workers, visual impaired therapists, developmental therapists, physical therapists, doctors, special needs teachers and who knows who else. Do you realize how overloaded the system is at present? The number of children entering the system is staggering. If you are in the business of saving high risk babies at all costs, should you not be as concerned about the support system that receives them and, most of all, about its adequacy? We are lucky in that we both are able to continue with our work. We have jobs that make it possible to take the time off for those never ending appointments. We are sorry to say that not everyone is that lucky. What happens to those babies? Do you ever follow it that far? Daniel will always struggle with life and we too will be
right along with him. Where will you be? McMaster neo-natal unit enjoys glory when it succeeds. How do you deal with the failures?

Our intention is not to place blame but rather to ask you to look beyond the parameters of the neo natal unit and hopefully be more respectful of your patients and their families.

For the rest of our lives we will wonder and worry about Daniel. He is a constant reminder to us that he is a product of today's technology. His problems are man made and his future was decided by someone who will never see him again.

We look forward to receiving your reply,

Respectfully yours,

Hugh and Andrea Williams

cc: Dr. G. Egger
Dr. M. Marrin
Dr. B. Schmidt
Mr. R.C. Walker
Dr. R. Whyte

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