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I am Marlene Strege, a resident of Falbrook, California and
registered occupational therapist, holding a B.S. Magna Cum Laude from the
University of Southern California. I
am accompanied today by my husband, John, who is behind me holding my
daughter, Hannah Strege, the first adopted former frozen embryo.
Thank you for this opportunity to testify.
Our story begins in 1996, when John and I realized we had a fertility
problem. We tried infertility
treatment for nearly
a year. It was
expensive, costing as much as $2,000 per cycle. For
us the treatment was also ineffective.
We were devastated when we finally came to terms with this. I suffered all of the standard side effects associated with
infertility, including severe depression and grief. I cannot adequately express how debilitating infertility
proved to us.
Infertility is a medical disorder that has an international
classification of diagnosis code (ICD-9).
Estimates of the number of Americans affected by it range from 6.5
to 10 million couples (or 13 to 20 million individuals).
Infertility has grown rapidly since the 1980's.
Experts are not sure of the reason, but believe it may be related
to delayed marriages and pregnancy, sexually-transmitted diseases,
pollution, diet, and lack of exercise.
We explored in-vitro fertilization and traditional adoption as a
substitute for genetic birth. However,
both had serious drawbacks. Traditional
adoption could not satisfy my deepest longing to experience pregnancy and
childbirth. It can take
months to identify and adopt a baby, particularly if the adoption involves
a child from a foreign country. Traditional
adoption obviously also does not have the advantage of prenatal bonding.
I was prepared to do almost whatever it took to become pregnant.
Like many couples feeling this way, John and I decided to pursue
in-vitro fertilization, despite its high cost. In 1997, a single IVF procedure was $12,000 at our clinic
plus costly medication. We heard of a couple at the clinic, which spent $60,000
trying to become pregnant. They
dipped into their retirement funds without successfully conceiving.
John and I pursued IVF anyway, only to be told on January 14, 1997,
that I had premature ovarian failure and was not able to produce eggs any
longer. Physicians informed
us that our only option to conceive was to obtain donor eggs. It occurred to me to ask
whether we could adopt embryos. The
doctor looked puzzled and said he had never done this, but would ask
families in his practice whether they would consider a "donation." He
returned to us later with a list of embryos differing in prospective hair
color, ethnicity, and other features.
Like a waiter soliciting an entré, he would have taken our order.
John and I were uncomfortable with this.
It seemed to us this was more like buying a car than conceiving.
In addition, we had heard about lawsuits filed against the
University of California at Irvine ("UCI"), alleging misappropriation
of patient eggs and embryos.
Plaintiffs claimed that doctors implanted their embryos without
their knowledge or consent, purportedly leading to the birth of several
dozen children.
UCI was forced to close its Center for Reproductive Health as a
consequence.
To avoid these types of problems, we contacted what is now Nightlight
Adoption Agency to inquire whether it offered embryo adoption.
It did not. However,
the executive director agreed that the agency should consider offering
this service in light of the rapid growth of the IVF industry and recent
events in Britain that led to the wholesale slaughter of 3,300 embryos.
The Snowflake Program, as well as a new frontier for adoption, was
born out of this meeting of minds.
Hannah's genetic parents chose us for embryo adoption the same way a
birth mother chooses a family with whom she wants to place her child.
Both genetic families and prospective adoptive families involved in
the Snowflake Program express their financial, religious, educational, and
other preferences. Families
must also provide thorough medical, psychological, paternal, and
background information. We also completed an adoption home study at an expense of
about $2,000. The home study
was valid for embryo, traditional, or international adoption.
The adoption approach is much safer and satisfying for all concerned
than mere embryo donation. Without
the background information available through the Snowflakes Program, we
would not have known the donor family's full psychological, medical, or
other characteristics or, indeed, whether the embryo was a relative.
Our daughter also would not have access to information on her
parentage when she began dating. Last,
donation would not communicate to Hannah the same special selection
adoption connotes.
Following matching, we agreed with Hannah's genetic parents upon an
open adoption agreement in March 1998.
See Ex. A, Timeline. The
agreement includes a confidentiality provision that prevents us from
providing information about Hannah's genetic parents, other than to say
that they, like many other families, were uncomfortable with the choices
that the IVF clinic provided them.
Hannah and her nineteen siblings were shipped via FedEx in straws of
two or three embryos in a canister of liquid nitrogen
to our IVF clinic in Pasadena, California.
They arrived on March 6, 1998.
See Ex. A, Timeline. My
body was prepared to receive three embryos with a series of hormonal
injections (estrogen and progesterone), starting with the first day of my
cycle. Ultrasounds were
conducted to assess how my uterine lining was thickening.
At the right moment on or about March 7, 1998, physicians began the
thawing process. Sadly, only
three of 12 embryos survived this process and were transferred into my
womb the following day. Freezing
embryos leads to the death of, on average, more than half of them.
Not all embryos adhere to a
mother's uterine lining either.
Therefore, adoptive mothers should be prepared to receive more than
one transfer. The cost to us
was about $2,500 per cycle plus drugs (costing about $40 per cycle) and
miscellaneous expenses.
During my first transfer, no children successfully implanted.
Accordingly, physicians thawed the remaining embryos on April 10,
1998. See Ex. A, Timeline.
Three survived including Hannah.
The embryologist snapped a picture of Hannah and her siblings for
our baby book. Id.
No mere "dot," she contained within her the entire blueprint
for human life, including all of her human organs and tissues.
She required a place to grow, nutrients and love – her same basic
needs today – but Hannah did the rest.
In fact, Hannah developed overnight outside of my body before the
transfer. The physician
referred to this as compaction, a process wherein all of her cells started
to move to one side and a fluid-filled sac began forming.
We have a picture of Hannah after this occurred outside of my womb
on April 11, 1998, the day she and her siblings were transferred to my
uterus. Id.
On April 20, 1998, I learned that my first reliable blood test revealed
an HCg level of 57, meaning I was pregnant with at least one child.
A second elevated test on April 23, 1998 and ultrasound on May 4,
1998, confirmed this. Id.
We grieved for Hannah's siblings, but were ecstatic to hear
Hannah's heartbeat on May 14, 1998. Id. Words
cannot explain how thrilled I was. By
far, this is the greatest thing I have experienced.
By the end of the first trimester, I was weaned off all hormone
injections. Like most
mothers, I experienced morning sickness and nausea.
The only complication in my pregnancy was an allergic reaction that
I developed to the sesame oil in progesterone injections.
On May 14, 1998, May 22, 1998, and August 20, 1998, additional
ultrasounds revealed my baby was doing fine.
Id. I felt her
kick for the first time on July 25, 1998.
Hannah Strege was born through a caesarian section on December 31,
1998, at 7:07 AM, weighing 6 pounds, 14 ounces.
See Id.; Ex. B, Birth Certificate.
She is the best gift parents could have and no different than most
children, all of who were once embryos.
See Ex. A, Timeline. I
keep a journal in my kitchen drawer of all of the touching things Hannah
does or says; it is becoming overloaded.
Recently, she began coming up to me and saying out of the blue with
a big smile, "Mommy, I happy!" You
cannot place a value on moments like these.
Jon and I never intended to disclose Hannah's origin to people other
than our immediate family and friends.
We adopted her long before we knew about any public controversy
involving embryo stem cell research.
Mary Tyler Moore and Sen. Tom Harken changed our plans.
The most difficult two days that my husband and I have endured
involved watching Ms. Moore compare my daughter to a goldfish and Sen.
Harken liken her to a dot on a piece of paper and refer to her as
expendable. Obviously, she is
none of these.
Notwithstanding the message conveyed by the media, John and I care as
deeply as anyone else about identifying therapies and cures for serious
diseases. In my occupation, I
care for many people who have severe disabilities. My mother died from pancreatic cancer. We ourselves suffer from a medical disorder.
We paid to save our daughter's cord blood at birth to advance
umbilical stem cell research designed to overcome serious disease.
See Ex. C, Official Certificate of Deposit.
However, the moral implications of this research and research using
adult and placenta stem cells is vastly different from using embryo stem
cells. One kills the subject human donor; the other does not.
Even atheists can appreciate this dichotomy.
Another myth propagated in the media is that embryos exist "in excess
of need." Setting aside the thoughts of many that the personhood of the
embryo renders this inquiry irrelevant, the claim is empirically
inaccurate. More infertile
couples exist than embryos likely to survive thawing.
Any woman can carry any embryo; tissue or blood matching is not
necessary. As embryo adoption
proliferates in the wake of this controversy, the "excess supply" of
embryos will evaporate.
Looking into Hannah's eyes, I weep for the roughly 188,000 frozen
human embryos like her placed in frozen embryo orphanages,
who could be adopted, rather than terminated with assistance from my
federal tax dollars. We plead
with Congress not to force millions of Americans like me to violate our
consciences and participate in another form of genocide, especially when
the advances possible with other stem cells are not nearly exhausted.
Joe
S. McIlhaney,
Jr., M.D., 1001 Health-Care
Questions Women
Ask 433 (1998).
Id.; Dominick Vetri, Reproductive Technologies and
United States Law, 37 Int'l
& Comp. L. Q. 505 (1988).
McIlhaney
supra note 1, at 432-433.
See Judith F. Daar,
Regulating Reproductive Technologies: Panacea or PaperTiger? 34
Hous. L. Rev. 609, 609-14
(1997).
Traci Watson, Excess
Embryos, U.S. News &
World Rep. 10 (August 12, 1996); James Walsh, A Bitter
Embryo Imbroglio: Amid
Dramatic Protests and Universal Unease, Britain Begins Destroying
3,300 Human Embryos, Time
(August 12, 1996).
See IVF Phoenix
Infertility Information Booklet ("Not all embryos survive the
freeze-thaw process. A
50% survival rate is considered reasonable.
After the thaw, embryos retaining 50 percent or more of the
cells they had before freezing are cultured and placed back in the
uterus via a tube inserted in the cervix.
The number returned varies with the desires of the patient
under the guidelines of age categories; under 35 years old, up to four
embryos, 35 years and older, up to six embryos.
National statistics for women 39 or less is 27% per embryo
transfer, for women over 39, 14% per embryo transfer.
Delivery rates will be lower due to miscarriage."); Michael
J. Tucker, Ph.D., The Freezing of Human Oocytes [Eggs], http://www.ivf.com/freezing.html
("Whether eggs are mature or not, standard cryopreservation
technologies appear to have their ultimate limitations not only in
terms of cryosurvival (% of eggs that are alive after thawing), but
also more importantly in their lack of consistency. 50% cryosurvival
may be an adequate overall outcome and is now commonly reported, but
not if it is a statistic that is arrived at by 90-100% survival in one
case, and 0-10% in the next. Consequently, radically different types
of freezing protocol may provide the answer to increased consistent
success. Different approaches have been applied, and include replacing
the principal salts in the freezing solutions in an attempt to help
reduce the stresses on the egg membranes during cryoprotectant
exposure. This has provided significant improvements in mouse egg
freezing, though it has yet to be applied clinically in the
human."); Michelle F. Sublett, Not Frozen Embryos:
What Are They and How Should the Law Treat Them? 38 Clev. St. L. Rev. 585, 593 (1990) (overall, "there is less
than a ten percent chance of creating a live birth from a frozen
embryo.").
Center
for Disease Control, 1998 Assisted Reproductive Technology Success
Rates 47 (2000).
Based upon a conservative
estimate of 188,000 frozen human embryos currently stored in IVF
clinics, see Lori B. Andrews, Embryonic Confusion; When You
Think Conception, You Don't Think Product Liability; Think Again,
Washington Post at B1, B4
(May 2, 1999); a conservative thaw survival rate of 50 percent, see
supra note 9; and a national pregnancy rate for IVF clinics of
between 13.4 percent (over 40) to 37.2 percent (under 35), see
supra note 10, between 12,600 and 35,000 children could be placed
for adoption and born in the families of the 6.5 to 10 million
infertile married couples in America who seek to raise children.
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