Forever in our hearts Dylann Siobhan

by Jean Morrisey

Date: Wed, 16 Feb 2000

Forever in our hearts Dylann Siobhan

My story begins when my obstetrician was unable to detect a heartbeat on my
almost 15 week gestation baby during a routine checkup on June 3, 1997. At
first my doctor could not find the heartbeat on the Doppler, then two
ultrasound examinations that day confirmed that my baby had died, quite
possibly within the last few days or even hours before my check up. The
doctor then scheduled me for a D&E surgery the next morning to remove my dead
baby from my womb. I was given absolutely no counseling, information or even
any compassion whatsoever.

After having four healthy children I thought I knew what pregnancy was all
about. I knew what delivery was all about, but I didn't know anything about
miscarriages. I was in complete, total shock.

When I began to emerge from the initial shock, less then a week after the
loss of my child, and began to ask more and more questions I was informed
that the baby that I had already grown to love was thrown away in the trash
as "medical waste" after a pathology exam, further compounding my grief. My
husband, Mike, and I had wanted to bury our baby with a proper and dignified
Christian service at his family's cemetery plot.

Sensing something was more then disturbingly wrong, my husband Michael and I
began to search for answers and contacted the Catholic hospital where our
last child was born almost exactly three years before. Their Pastoral Care
Director, Martha immediately responded with immense amounts of information,
compassion and understanding. Her first response was to suggest to give our
baby a name, we chose Dylann Siobhan because those were the names we had
picked out for a boy and a girl. (My doctor never informed me what sex my
baby was.) She also suggested planting a tree or some flowers in memory of
our baby, we chose a white tea rose bush that we planted in the garden in our
back yard. She then presented me with a miraculous medal as a keepsake, which
I'll always cherish. Martha's treatment was truly the opposite of what I
received two weeks earlier and her compassionate care provided me with the
first tangible evidence that my baby had existed.

The more we learned, the more we realized that hospitals are victimizing
women and their babies at astounding rates by minimizing their losses,
disposing of their babies as medical waste, and simply ordering the patients
to "get on with your life, have another baby, and/or get over it." You simply
can't "get over" the loss of any child no matter how small, or how early in a
pregnancy, if you are hoping and praying for that baby's healthy birth. Any
doctor or hospital who minimizes this type of loss is abusive. As we began to
question my hospital we were met with cold resistance and obstacles. That's
when some amazing circumstances began to occur.

A few weeks later the hospital finally agreed to meet with us, August 8,
1997, two months after my loss. In the weeks before the meeting we began to
prepare and even contacted The Boston Globe newspaper about a possible story
on miscarriage. That's when truly amazing circumstances began happening. A
Boston Globe newspaper reporter, who had been pitching a miscarriage story to
them, contacted us. She had just been assigned to write a story on
miscarriage and compassionate care just days before our contact.

I had also been utilizing the Internet for information, support and contacts
with other women who had suffered miscarriages. Many women have turned to the
Internet as their only support after the loss of their babies and the stories
there would break your heart. We posted a bulletin notice asking for stories
about hospital experiences, good or bad. The first response came from Julie
who had a far better experience at her hospital in Utah. She was given lots
of support and counseling from the whole staff of her hospital, had the
cremated remains of her 11 weeks miscarried baby, had been given many options
in her care and treatment, mementos and literature, support groups, and she
miscarried the same day and in the same way as me. She sent me a local
newspaper article and the literature she received from her hospital.

Days before the meeting with the hospital we were interviewed and
photographed by The Boston Globe for their article. My husband and I
assembled ten gray three ring notebooks with 75 pages of information on every
aspect of pregnancy loss we could find that we gave to each participant at
the meeting. The hospital administrators at the meeting brought no
information with them. They were most interested in Julie's hospital
information, literature and newspaper articles. It set the tone of the
meeting that a little hospital in Utah could treat their patients so much
better then the big city hospital that they were. We met with the hospital
minister right after the meeting who stated, "there were some very
embarrassed faces here today. You've opened up a large can of worms." We then
planned a memorial service the following weekend with him at the hospital
chapel.

Two days before the service he was contacted by a hospital vice president,
they had located some "tissue samples" of our baby from the pathology lab to
return to us for burial. We purchased an antique brass jewelry box, adorned
with an angel, the night before the service. We cut a small baby blanket,
placed a tiny teddy bear along with a baby ring inside. The hospital Reverend
brought the remains of our baby to the service, performed a beautiful
ceremony, and then we able to have a burial in our family plot.

The Globe article came out the following Monday. The article's writer said
later that she had never gotten more responses before. My husband got many
responses at his work where almost no one knew of the pregnancy. Many related
similar happenings to family members, wives, and themselves.

A week later we had to get away and on the spur of the moment headed to
Camden, Maine. Two days into our stay, completely by chance, I opened a local
newspaper to an article about an upcoming conference on miscarriage support.
We contacted the hospital where it was to happen just to quickly drop by and
pick up some information. They already knew who we were from The Boston Globe
article and were totally stunned that we were coming by.

Upon arrival at the conference The Penobscot Bay Medical Center Chaplain
recognized us from the Globe picture and told us how he gets The Boston Globe
only on Mondays and Fridays, cut out the article and gave it to the social
worker that Monday. She copied it and placed it in the folders that went to
all of the seminar participants. We then picked up two folders with our first
names on them. The social worker then greeted us and couldn't believe that we
were there in the flesh. She couldn't guess at the odds that we were there
vacationing that week and found out about the seminar. She related the story
weeks later of how the seminar was almost canceled if it hadn't been for the
Chaplain bringing her that article, that day, which inspired her to get a few
more participants to come. That and when the hospital administration saw the
article it forced them not to cancel. The deadline to cancel was the day the
article came out.

When we arrived back from our vacation the next day we found that my
hospital's risk manager had sent a letter, and it was waiting in our mail. It
looked like all of our efforts were for nothing as they inferred that they
were only "addressing those concerns that are legitimate," and "that giving
the family the opportunity to have the remains of an undelivered fetus is
something we should consider."

If not for the spiritual boost we had gotten from the seminar the day before,
we would have given up. We began assembling folders about our story, complete
with all of our correspondence with my hospital and their replies, and sent
it to every expert on pregnancy loss, every hospital that we knew of in the
area that did the right things for women who miscarry, and many media
outlets. The response was an outpouring to us and to the hospital. Sherokee
Ilse, author of "Empty Arms," called us instantly upon reading the folder and
offered her assistance. After accessing our position we vowed to have a major
statewide medical seminar on the proper management of perinatal loss.

In December 1997 we found out that my hospital was actually breaking a twenty
year old Massachusetts statute, Chapter 111 Section 202, Fetal Deaths;
Reports; Parents Informed of Rights Regarding Disposition of Remains. This
law clearly states that "Providing that prior to disposition, the parents
shall be informed in writing of the hospital policy relating to disposition,
and shall also be informed of the availability of a chaplain for counsel."
The Registrar, Investigation Division and the Assistant Commissioner of the
Massachusetts Department of Public Health were all in contact with us and
were extremely concerned with our complaint, and that my hospital, and other
hospitals, have been openly negligent of this law with possibly thousands of
patients.

The state department of public health handed down it's decision on January
16, 1998. The story of the investigation of the hospital, as well as the
decision to cite the hospital generated about one hour of total TV news
airtime on every station in Boston, as well as four articles in two Boston
newspapers, Associated Press wire stories, web site stories on media outlets,
and several newspaper stories in daily papers in Worcester, Springfield,
Massachusetts, and Providence, Rhode Island.

Six days after the Massachusetts Department of Public Health cited my
hospital I met with several perinatologists from various hospitals from
around the state at a quarterly compliance meeting at a DPH office. The
doctors there stated that maybe only 20% of hospitals around the state were
complying with this 20 year old law and agreed that there needed to be a
major conference, along with the many directives that were being sent out by
the DPH would stop the abuses like the one we had suffered. One doctor in
particular was very concerned about my story and went back to his hospital
where he began to tell his staff about our wanting to put on a conference to
educate all hospitals in Massachusetts about the proper care for perinatal
loss patients. His hospital, UMass Memorial Medical Center, has a model
perinatal bereavement program in its maternity center, and it's been in place
for almost 30 years. They knew it was time for the rest of the state to learn
about not only their program, but how to properly treat women who lose their
babies during pregnancy.

When I contacted them a week later they already had begun discussions on how
to put a conference on. My husband and I met with them only days later and
gave them our ideas about how a conference should educate all maternity
health care providers including doctors, nurses, social workers,
administrators and clergy by bringing in the best experts in each field. Many
of these experts had been in contact with us regularly during our struggles
with my hospital, and they all were 100% behind the conference idea and
willing to come on any given day.

Finally after thousands of hours of work by both UMass Memorial Health Plan,
and ourselves, the conference took place on September 22, 1998 at The Centrum
in Worcester, Massachusetts. The conference was dedicated in memory of our
baby, Dylann Siobhan and to a the head of neonatology, Dr. Braden Griffin, at
UMass Memorial who passed away suddenly. He was very instrumental in putting
the model bereavement program in place at UMass Memorial. Without his work
and caring the conference would never have taken place.

Just days before the conference I tried to contact my doctor to see if she
could attend, to be educated by the fine speakers we had assembled. When I
called her office I was disappointed to learn that she had recently married
and moved to Australia.

There were 250 medical professionals from over 40 different hospitals and
medical centers who attended the conference. The day began with the State
Representative who heads the Health Care Committee at the State House and the
top legal experts fully explaining the Massachusetts laws regarding
miscarriage and proper disposition of fetal remains, and ended with the
Governor of Massachusetts sending a proclamation decreeing October be
Pregnancy and Infant Loss Awareness Month in Massachusetts. Every session,
every speaker was dynamic, powerful and moving for all of the attendees.

The conference was quite possibly the one reason that I had kept going and to
bring about a purpose from my baby's brief time in my life.

Two days after the conference a woman named Victoria, from Florida, responded
to various Internet stories that covered the conference and asked if I would
have an interest in helping to start a pregnancy loss foundation which would
be modeled after one that was founded in Australia just four years ago. I was
astounded to be hearing about a pregnancy loss foundation from Australia
because just days before I had learned that my doctor had moved down there
and it had me wondering how hospitals had been handling pregnancy loss in
Australia. I was stunned at another amazing twist of fate!

After visiting the Bonnie Babes’ web site at www.bbf.org.au/ I noticed that
they were very involved with public awareness campaigns about the proper care
and counseling for women who suffer miscarriages, and have many very
successful fund raising campaigns that fund a 24 hour-a-day nation wide
counseling hotline, and even funding medical research in the field of
prevention of miscarriage and premature delivery of babies. The "Growing
Healthy Babies" calendars are sold nation wide in Australia by Target and
K-Mart stores, and are sponsored by many multinational corporations. Their
foundation's patrons include members of their Parliament, and even the Prime
Minister.

Just weeks after our first correspondence the founder of Bonnie Babes, Rachel
Stanfield-Porter visited the United States and came to Boston where we toured
three hospitals, met with the heads of maternity, neonatology and one of the
country's top doctors in recurrent miscarriage research, Doctor Joseph Hill
of Brigham & Women's Hospital in Boston. The meeting was covered by a Boston
TV news station and the story aired during the 5 PM newscast that day.

Rachel is now working with Victoria and me to help start The Bonnie Babies
Foundation of America where we will be utilizing many of the same public
awareness campaigns, fund raising techniques, and establishing nation wide
counseling for not only women and families who suffer a perinatal or neonatal
loss, but also funding hundreds of educational forums such as my seminar in
Worcester last year that will train thousands of medical professionals who
care for every maternity patient in the United States.

The goal of The Bonnie Babies Foundation of America will be to drastically
improve the care of every maternity patient in the United States, especially
those patients who never make it to the delivery room, or lose their babies
during or after delivery, and to fund research that lowers the staggering
statistic of one out of four to five women who lose their babies to
miscarriage, stillbirth and neonatal loss.

Most recently we found out that some of our efforts here in Massachusetts had
been undermined by the Commissioner of the health department, along with the
head of obstetrics of the very hospital that I went to that was investigated
and cited, because of my complaint, and had not been following the state
statute for the entire 20 years of its existence. We worked along with all of
the American pregnancy loss organizations, such as The National SHARE Office,
and the Archdiocese of Boston to overturn a health department advisory that
was put in place on Christmas Eve of 1998. It would have eliminated all of
the rights of patients that suffer pregnancy losses under 11 weeks, and
allowed hospitals to use confusing language for all other patients within the
consent forms given to them for disposition.

During the time the advisory was in place, in protest I returned the
proclamation I received at the conference back to the Governor's office at
the State House. The NBC affiliate in Boston covered the story and it was
instrumental in making the Governor's office aware of the problems created by
the health department, and the tiny handful of doctors involved that were
seeking these changes.

Now in order to strengthen the current laws here in Massachusetts we have
begun an initiative petition process to amend the state statute to bar
hospitals from any kind of medical waste disposal of a pregnancy loss, and
regulate hospitals to bury or cremate all remains that are left to them for
disposition. We based our proposed law on one that was passed in Minnesota
twelve years ago. The first hurdle was to have the Attorney General of the
Commonwealth clear the proposed amendment based on its constitutional
viability, which it has done.