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Debbie Joslin (AK Alaska)
joslin@wildak.net
(907) 895 4565 |
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This is a portion of a speech given by
Eagle Forum Alaska
President, Debbie Joslin on the capitol steps, January 22, 2008:
Click Here for full speech
In 1976, I exercised the right the Supreme Court had handed me, and I
aborted my unborn child. I did not want an abortion. But like many women, I
felt that I too had no choice. I had no husband, no family I could go to,
and no crisis pregnancy center. But, my boyfriend had heard there was a
place called Planned Parenthood where we could rid ourselves of a problem. I
did what was expected of me. I was not forced. But like millions of other
women, I hoped to the last that someone would offer me another choice. It
never came and so I ended a life, my own child’s life. I found that abortion
didn’t offer me reproductive freedom. It brought destruction, pain and
regret and it robbed me of my child. The promises abortion offered were all
a lie and I know now that there was a better choice.
Twenty-three years later, in 1999 I was married and we had three healthy
children. In January of that year, I went for a routine ultrasound on the
baby we expected to be born in May. The technician was all business and
didn’t engage in any small talk. Finally, I was told the doctor would like
to talk with me. He described a heart condition I had never heard of before,
hypoplastic left heart, a heart with only three chambers. I remember him
saying to me that my personal physician would explain my options. There was
something about the way he said it…. “We aren’t going to kill him if that is
what you’re talking about.” He didn’t answer because that is what he meant.
Soon after, I found out that our little boy we named Isaiah also had a
possible brain cyst, and a missing or unconnected stomach. I got the name of
a perinatologist in Anchorage and called to make an appointment. Over the
phone I spoke with the specialist and told her all I knew of Isaiah’s
condition. Based on a phone conversation and not an examination, she told me
he probably had a chromosomal abnormality and should be aborted. I told her
that was not an option. I told her I hated abortion.
She went ahead and scheduled an appointment for me to be seen in her office
at Providence hospital the following week. My husband and I drove from Delta
Junction at forty below, 350 miles to Anchorage. When we arrived at the
hospital we were first seen by the genetic counselor. We were treated as if
we were ignorant for continuing on with the pregnancy. I underwent a second
ultrasound with more sophisticated equipment and was told of a myriad of
other potential problems. I was told Isaiah would probably miscarry and even
if he was born alive he would only live for a few minutes. I was told that
his condition was incompatible with life, that he was going to die anyway,
and to continue with the pregnancy would be very expensive and hard on my
other children. She told me that if I continued with the pregnancy I would
be putting my own life in danger and it would be very irresponsible of me to
leave my other children motherless.
We left that day very discouraged but I knew too much about abortion to be
moved by anything they said to me. I was scared for Isaiah and I was scared
I would die after all that the doctor had told me. We had phone
conversations with the genetic counselor over the next two weeks and finally
discovered that Isaiah had Trisomy 13, a chromosomal abnormality. The doctor
told me that ALL babies with Trisomy 13 die. Later I found out that 90% of
all babies born with Trisomy 13 die before they are six months old. But they
do not all die. They lied about the prognosis for Isaiah and about the risk
to my own health. I discovered later that my unborn baby’s health problems
were never a risk to my health. They withheld information from me and gave
me misinformation all in an attempt to persuade me to have an abortion. They
chided me, “You should have had your amnio earlier,” a reference to the fact
that I was too far along to legally have an abortion in Alaska. No matter,
they were ready to send me to Tiller’s abortion clinic in Wichita, KS. They
could be sure that Tiller would perform an abortion on me even though I was
too far along in Kansas too. They would simply say my life was in danger and
skirt the law in that fashion.
Finally, after I had been asked many times about having an abortion and two
weeks had passed, they told me that if I didn’t want to terminate the
pregnancy I could deliver the baby at Providence and the doctor could
arrange for the nursing staff to not interfere so we could be sure Isaiah
would die. I declined that offer too and was finally told of a parent
support group for families whose children had Trisomy 13. The Genetic
Counselor apologized when she gave me the 800 number, “They are, well,
rather positive.” She seemed apologetic as though I would miss the negative
advice they had been dishing out.
I carried my baby to term and I am glad I did. Isaiah was born May 10, 1999
and lived and was loved for 32 days. Through answered prayer and God’s
mercy, the few minutes we were told to expect turned out to be a month. We
loved him and he brought us much joy. His oxygen saturation monitor showed
us that he responded with improved vital signs whenever he was being held or
stroked by someone who loved him. When he died our hearts were broken but we
were not racked with guilt and we have no shame. We gave Isaiah the best
care we could give and we loved him as we love our other children and we are
thankful to have had that short time with him. We have never for one moment
regretted giving our son a chance to live and love, a chance to know what it
is like to be held in his momma’s arms and to be kissed by his big strong
Daddy. Contrary to what the doctor told us, giving life to Isaiah was not
too expensive. It was priceless. Giving life to Isaiah was not too hard on
our other children, it was a blessing to them.
Debbie Joslin joslin@wildak.net
907 895 4565
This is a portion of a speech given by
Eagle Forum Alaska
President, Debbie Joslin on the capitol steps, January 22, 2008:
Click Here for full speech
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| Physician's Home
Not Compatible with
Life, a diary of keeping Daniel
By Kylie Sheffield
Prenatal
Diagnosis Information Package -
Compiled by Kylie Sheffield (mum of Daniel, full
Trisomy 13) in consultation with families on this web site |
| LINKS FOR PROFESSIONALS FROM
MEDICAL AUTHORITIES |
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Lethal Language Lethal Decisions
By Tracy K. Koogler, Benjamin S. Wilfond, and Lainie Friedman Ross
©
The Hastings Center. Reprinted with
permission. This article originally appeared in the Hastings Center Report,
vol. 33, no. 2 (2003),” Editorial email:
editorial@thehastingscenter.org.
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Intensive cardiac management in patients with trisomy 13 or trisomy 18
Am J Med Genet Part A.
*Intensive cardiac management consisting of pharmacological intervention for
ductal patency and cardiac surgery was demonstrated to improve survival in
patients with trisomy 13 or trisomy 18 in this series. Therefore, we suggest
that this approach is a treatment option for cardiac lesions associated with
these trisomies. These data are helpful for clinicians and families to
consider in the optimal treatment of patients with these trisomies.
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Show Me the Money: Financial Considerations in Responding to Parental
Wishes.
Benjamin S. Wilfond, MD,
head of Ethics of
Seattle Children's Hospital
Watch the Webcast
View presentation (PDF 425KB)
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Noninitiation or Withdrawal of Intensive Care for High-Risk
Newborns
From the American Academy of Pediatrics Committee on Fetus and Newborn
Organizational Principles to Guide and Define the Child Health Care System
and/or
Improve the Health of All Children
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Amniocentesis: The Struggle to Choose
By Wendy Hogarth, Mother to Jared diagnosed with trisomy 13 at birth.
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Post-Viability Abortions
Patricia Lee June, M.D, Pediatrician and PPL board member
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WHAT TESTS SHOULD BE DONE
ONCE MY CHILD IS DIAGNOSED
WITH TRISOMY 13?
By Christine Nelson MD, Pediatric Hospitalist
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The parents' journey: continuing a pregnancy after a diagnosis of Patau's
syndrome
By Louise Locock,
senior qualitative researcher,
Jane & Jon Crawford,
parents of Benjamin
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Values in End-of-Life Decision-Making: Some Implications for People with
Disability
By Jennifer Fitzgerald , Barrister of the Supreme Court of NSW.
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Giving Terminally Ill Babies and Their Families an Alternative to
Abortion
By Liz Townsend
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PRENATAL
DIAGNOSIS: FEARS & EXPECTATIONS
by Agneta Sutton, Head of Research
The Centre for Bioethics and Public Policy
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Post-viability abortions
by Pediatrician Patricia Lee June, M.D.
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Clinical Case - Patau Syndrome and Perinatal Decision Making
Ethics Journal of the American Medical Association May 2005, Volume 7
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Trisomy 13 Facts
&
A Guide for
Professionals
From the Support Organization for Trisomy 18, 13 and Related Disorders
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A
Different Kind of Crisis Pregnancy: When There is “Bad News” About Baby
By Monica Rafie
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Understanding Grief: A Component of Neonatal Palliative Care
By
Tricia L. Romesberg, MSN, CNNP
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Disability
Matters - Blog - Institute for the Study of Disabilities & Bioethics Dr.
Mark Mostert, from Johannesburg, South Africa, is co director of Regent
University’s Institute for the Study of Disability and Bioethics.
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| Articles on Eugenics, Ethics,
Selective Abortion, Selective Induction and the killing of Disabled Children |
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Personal Qualms Don't Count: Hospital Forces Nurses To Participate In Genetic
Terminations
by MARNIE KO
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ESSAYS BY TRISOMY 13 PARENTS
Free
literature to share with your patients |
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WHEN WHAT SEEMS BROKEN IS
PERFECT
By Barbara Farlow (Annie's Mom)
The decision to accept
disability:
One family’s perspective
By Barbara Farlow BEngSci MBA
A Letter to: Pediatric
Physicians, OB-Gynecologists, Geneticists & Healthcare Providers, from ThereseAnn - A parent of a
Trisomy 13 child
How Our
Babies have changed our Lives
by Maria Demers
A Mother's
letter to newly diagnosed Families
(Printable to have on hand in your office to give to patients) by
Julie Sexton
Message to
All Obstetricians & Perinatologists
Message to All Physicians,
Specialists, and Doctors Alike by Mary Mabeus
Letters to Physicians
-Trisomy 13 Survival Tactics
-Patients
Plan of Care - Faith in Action
-Considerations in Making a
Specified Plan of Care
by Janina E. Arritola
How can anyone say that
these children do not contribute to society, therefore what is the point?
by Melissa Roy
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| Website & Articles for Surgical Procedures for those opting for medical intervention for specific abnormalities.
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What is an Omphalocele?
The method of delivery will be discussed with you as the
time gets closer. The method of delivery is dependent on the
size of the omphalocele. If the size is quite large and
especially if the liver is involved, the doctor may prefer
to do a cesarean section (c-section) to avoid the risk of
injury to the liver. Otherwise, the preferred method of
delivery is vaginal."
Decompressive cranioplasty may improve the clinical symptoms
of children with mild trigonocephaly and intracranial pressure:
report of 56 patients - June 5 2004
Mild trigonocephaly with clinical symptoms:
analysis of surgical results in 65 patients
- June 5 2004 |
| Termination, Abortion the only choice?
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(A must read for Physician’s who advise
parents after early testing and prenatal diagnosis) These women share the immense pain a termination has left on their lives.
When counseled by Professionals they were offered no hope. They were not given
the option of carrying to term and holding their child, if even briefly. Nor
offered the compassionate support this diagnosis requires. Instead these women
felt they had to make the heart breaking choice to end their child’s life.
- - -
A Story of Regret - "Maybe if the professionals we had
talked to had given us more information we would have made a different choice.
To this day, I still live with the pain of the choices we made. Trisomy needs to
have a bigger voice and all the professionals need to be more open minded and
not so much on terminating"
~Katie -
Full Story
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"It is a choice I cannot live with to this day. I look at these pictures,
read your stories and my heart aches. Since I had a D&E, I never even got to
see or hold my daughter."
~Laurie-Beth
Full Story
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After experiencing the effects of an abortion with a previous pregnancy,
Elizabeth shares her experiences with carrying to term a child with Patau
Syndrome - Trisomy 13.
~Elisabeth Slotkin
Full Story
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This is a portion of a speech given by Eagle Forum Alaska President,
Debbie Joslin on the capitol steps, January 22, 2008
Full Story |
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Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
Translation