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S. HRG. 108–975 

SCIENTIFIC AND MEDICAL ADVANCES IN THE 

FIELD OF IN UTERO SURGERY 

HEARING 

BEFORE THE

SUBCOMMITTEE ON SCIENCE, TECHNOLOGY, 

AND SPACE 

OF THE

COMMITTEE ON COMMERCE, 

SCIENCE, AND TRANSPORTATION 

UNITED STATES SENATE 

ONE HUNDRED EIGHTH CONGRESS 

FIRST SESSION 

SEPTEMBER 25, 2003 

Printed for the use of the Committee on Commerce, Science, and Transportation 

( 

(II) 

SENATE COMMITTEE ON COMMERCE, SCIENCE, AND TRANSPORTATION 

ONE HUNDRED EIGHTH CONGRESS 

FIRST SESSION 

JOHN MCCAIN, Arizona, Chairman 

TED STEVENS, Alaska 

CONRAD BURNS, Montana 

TRENT LOTT, Mississippi 

KAY BAILEY HUTCHISON, Texas 

OLYMPIA J. SNOWE, Maine 

SAM BROWNBACK, Kansas 

GORDON H. SMITH, Oregon 

PETER G. FITZGERALD, Illinois 

JOHN ENSIGN, Nevada 

GEORGE ALLEN, Virginia 

JOHN E. SUNUNU, New Hampshire 

ERNEST F. HOLLINGS, South Carolina, 

Ranking 

DANIEL K. INOUYE, Hawaii 

JOHN D. ROCKEFELLER IV, West Virginia 

JOHN F. KERRY, Massachusetts 

JOHN B. BREAUX, Louisiana 

BYRON L. DORGAN, North Dakota 

RON WYDEN, Oregon 

BARBARA BOXER, California 

BILL NELSON, Florida 

MARIA CANTWELL, Washington 

FRANK R. LAUTENBERG, New Jersey 

JEANNE BUMPUS, Republican Staff Director and General Counsel 

ROBERT W. CHAMBERLIN, Republican Chief Counsel 

KEVIN D. KAYES, Democratic Staff Director and Chief Counsel 

GREGG ELIAS, Democratic General Counsel 

SUBCOMMITTEE ON SCIENCE, TECHNOLOGY, AND SPACE 

SAM BROWNBACK, Kansas, Chairman 

TED STEVENS, Alaska 

CONRAD BURNS, Montana 

TRENT LOTT, Mississippi 

KAY BAILEY HUTCHISON, Texas 

JOHN ENSIGN, Nevada 

GEORGE ALLEN, Virginia 

JOHN E. SUNUNU, New Hampshire 

JOHN B. BREAUX, Louisiana, Ranking 

JOHN D. ROCKEFELLER IV, West Virginia 

JOHN F. KERRY, Massachusetts 

BYRON L. DORGAN, North Dakota 

RON WYDEN, Oregon 

BILL NELSON, Florida 

FRANK R. LAUTENBERG, New Jersey 

(III) 

C O N T E N T S 

Page 

Hearing held on September 25, 2003 ..................................................................... 1 

Statement of Senator Brownback ........................................................................... 1 

WITNESSES

Armas, Alex, Parent, Villa Rica, Georgia .............................................................. 4 

Prepared statement .......................................................................................... 6 

Armas, Julie, Parent, Villa Rica, Georgia ............................................................. 3 

Prepared statement .......................................................................................... 4 

Clancy, Michael, Photographer, Roscoe, Illinois ................................................... 10 

Prepared statement .......................................................................................... 11 

Thorp, M.D., James A., Associate Director, Regional Perinatal Center, Sacred 

Heart Women’s Hospital and Clinical Professor, Department of Obstetrics 

and Gynecology, University of Florida at Pensacola ......................................... 8 

Prepared statement .......................................................................................... 9 

APPENDIX

Lautenberg, Hon. Frank R., U.S. Senator from New Jersey, prepared statement ...................................................................................................................... 21 

Response to written questions submitted by Hon. Frank R. Lautenberg to: 

James A. Thorp, M.D. ...................................................................................... 21 

Michael Clancy ................................................................................................. 22 

(1) 

SCIENTIFIC AND MEDICAL ADVANCES IN THE 

FIELD OF IN UTERO SURGERY 

THURSDAY, SEPTEMBER 25, 2003 

U.S. SENATE, SUBCOMMITTEE ON SCIENCE, TECHNOLOGY, AND SPACE, COMMITTEE ON COMMERCE, SCIENCE, AND TRANSPORTATION, Washington, DC. 

The Subcommittee met, pursuant to notice, at 2:38 p.m. in room 

SR–253, Russell Senate Office Building, Hon. Sam Brownback, 

Chairman of the Subcommittee, presiding. 

OPENING STATEMENT OF HON. SAM BROWNBACK, 

U.S. SENATOR FROM KANSAS 

Senator BROWNBACK. Good afternoon. The hearing will come to 

order. I apologize for my lateness. I had another appointment that 

I had to attend to before getting over here. Thank you all for being 

here. 

During the hearing today, I would like to examine some of the 

most recent advances in the fields in utero surgery and fetal medicine. In particular, we will hear the remarkable story of a family 

who chose to undergo surgery for the benefit of an unborn child, 

Samuel Armas. Samuel underwent fetal surgery to treat spina 

bifida. Samuel is with us here today, along with his parents, Alex 

and Julie. 

The ability to treat and cure diseases for the benefit of a young 

child who has yet to be born is an amazing advance that will help 

alleviate the suffering of many young children, and, in fact, is already doing so. These are advances that all people, regardless of 

their political views, can embrace as a positive step. I’m heartened 

by these advances and look forward to hearing from the respective 

witnesses. 

Let me also say that this hearing is not about abortion; rather, 

it is about advances in therapeutic interventions that are effectively treating people suffering from diseases before they are born. 

There is little debate about whether the child in utero is alive; but 

whether it is a life, a life worthy of protecting, that is the debate, 

and we will continue to have that on another day. 

Today, I would like to focus primarily on the testimony of the 

family that chose to undergo this remarkable intervention, and the 

reasons they chose to do so given the risks associated with a surgery of this nature, as well as the amazing results of this intervention. 

Finally, I would like to close by quoting from a recent article that 

appeared detailing the advances in ultrasound technology that 

2 

show, quote, ‘‘An unborn child can smile, yawn, blink, suck his fingers, and cry as early as the 26th week of pregnancy.’’ 

We’ve got those blown up, and I’ll submit into the record an article that appeared in the Sunday Herald Sun, September 14, of a 

4–D, four-dimensional, picture, sonograms, showing—and this a 

child pictured at 24 weeks of age—and we’ll have those to hand out 

to people so that they can see. It’s really quite remarkable. You 

can’t see it much in this detail of the picture, but the smiling child 

here is really quite remarkable to see. 

[The information referred to follows:] 

Senator BROWNBACK. These advances are amazing. These new 

scientific discoveries continue to help illuminate the public policy 

debate on the importance of life when it begins. 

Now I’d like to turn to our panel of witnesses. We have an exciting set of witnesses here today with us. Mr. Alex Armas, he’s a 

parent from Georgia, delighted to have you here with us today, parent of Samuel. And his wife, Julie, is here. Glad to have you here, 

and, I think, expecting another one when? 

Ms. ARMAS. Three weeks. 

Senator BROWNBACK. Three weeks. So just barely here and able 

to travel well. Mr. Michael Clancy is a photographer that was involved in taking some of the pictures that—they were involved in 

this particular surgery. And Dr. James Thorp, Medical Doctor, a 

Clinical Professor of Obstetrics and Gynecology at the University of 

Florida, Pensacola, and Associate Director of the Regional 

Perinatal Center at Sacred Heart Women’s Hospital, in Pensacola, 

Florida, who was involved in these surgeries, as well. NIH is doing 

some initial reviews of these surgeries and their efficacy. We will 

hear some about that, as well. 


925SAM1.eps
3 

But let’s start with the witnesses and the testimony, and I believe we’ll start with Mr. and Mrs. Armas. If you’d be willing to 

start in your testimony, we would certainly appreciate that. 

First, let me say thank you and welcome for coming. We had to 

do some delays because of Isabel, it wasn’t cooperating quite as 

much, but delighted that you could still make it with us here today. 

STATEMENT OF JULIE ARMAS, PARENT, VILLA RICA, GEORGIA 

Mrs. ARMAS. Good afternoon. 

My name is Julie Armas, and I am honored to be invited here 

today to tell you of our experience with fetal surgery. 

In the spring of 1999, my husband and I were thrilled to learn 

that after two miscarriages and numerous infertility treatments, 

we were finally expecting a baby. By the 15th week of my pregnancy, our unborn son was diagnosed with spina bifida. The first 

words my doctor said were, ‘‘Well, this is really bad.’’ 

We learned that the opening in our baby’s spine caused permanent nerve damage that could prevent him from walking and using 

the bathroom normally. More importantly, the damage to the spine 

had also caused his brain to begin forming in an abnormal way, 

which could ultimately lead to hydrocephalus, causing mental deficit, as well. 

In light of this grim diagnosis, we were told that at least half of 

all babies with spina bifida are aborted. But abortion was never an 

option for us. Instead, we began educating ourselves about spina 

bifida, and learned of an experimental procedure to close the spinal 

lesion in utero, rather than after birth, which is what is traditionally done. We were excited that there was someone somewhere interested in preventing some of the problems caused by spina bifida. 

Despite the reservations of my physician, my husband and I 

traveled to Vanderbilt University and underwent an intensive twoday consultation with surgeons, social services, and medical 

ethicists. We were immediately told that fetal surgery was not a 

cure for our son, whom by now we had named Samuel. 

Senator BROWNBACK. I’m kind of partial to that name. I like that 

one. 

[Laughter.] 

Mrs. ARMAS. The greatest potential benefit of surgery before 

birth was that in many cases the brain malformation had improved, thus decreasing the changes of hydrocephalus and the subsequent mental issues. 

We were asked why we would consider such a life-threatening 

procedure when spina bifida itself is typically not life-threatening. 

And our answer was that Samuel was not a hypothetical; he was 

already a member of our family, our son, and deserved our best efforts to improve his life. 

After much prayer and support from family and friends, Samuel 

and I had maternal fetal surgery at Vanderbilt on August 19, 1999. 

I was 21 weeks pregnant, and he weighed about a pound. 

Thankfully, no complications arose following the surgery, and 

Samuel was born by scheduled Cesarean on December 2, 1999, 15 

weeks after our surgery. He never went to the intensive care nursery, and came home with me 4 days after birth. Today, he is an 

4 

active—as you may learn—walking three-year-old who attends preschool, and is age appropriate developmentally. 

In conclusion, I am grateful for the attention that this Committee 

is giving to fetal surgery. Though it’s not without significant risk, 

it provided a ray of hope when we were in a very dark place. 

Thank you. 

[The prepared statement of Mrs. Armas follows:] 

PREPARED STATEMENT OF JULIE ARMAS, PARENT, VILLA RICA, GEORGIA

Good afternoon. 

I am honored to be invited here today to tell you of our experience with fetal surgery. 

In the spring of 1999, my husband and I were thrilled to learn that after two miscarriages and numerous infertility treatments, we were finally expecting a baby. By 

the fifteenth week of my pregnancy, our unborn son was diagnosed with spina 

bifida. The first words my doctor said were, ‘‘This is really bad’’. We learned that 

the opening in our baby’s spine caused permanent nerve damage that could prevent 

him from walking and using the bathroom normally. More importantly, the damage 

to the spine had also caused his brain to begin forming in an abnormal way, which 

could ultimately lead to hydrocephalus causing mental deficits as well. In light of 

this grim diagnosis, we were told that at least half of babies with spina bifida are 

aborted. 

Abortion was never an option for us. Instead, we began educating ourselves about 

spina bifida, and learned of an experimental procedure to close the spinal lesion in 

utero, rather than after birth. We were excited that someone, somewhere, was interested in preventing some of the problems caused by spina bifida. Despite the reservations of my physician, my husband and I traveled to Vanderbilt University and 

underwent an intensive two day consultation with surgeons, social services, and 

medical ethicists. We were immediately told that fetal surgery was not a cure for 

our son, who by now we had named Samuel. 

The greatest potential benefit of surgery before birth was that in many cases, the 

brain malformation had improved, thus decreasing the chances of hydrocephalus 

and subsequent mental issues. We were asked why we would consider such a lifethreatening procedure when spina bifida itself is typically not life-threatening. Our 

answer was that Samuel was not a hypothetical, he was already a member of our 

family, our son, and deserved our best efforts to improve his life. 

After much prayer and support from family and friends, Samuel and I had maternal-fetal surgery at Vanderbilt on August 19, 1999. I was 21 weeks pregnant, he 

weighed about a pound. Thankfully, no complications arose following surgery, and 

Samuel was born by scheduled Cesarean on December 2, 1999, fifteen weeks after 

our surgery. He never went to the intensive care nursery, and came home with me 

four days after birth. Today he is an active, walking, three year old who attends 

preschool and is age-appropriate developmentally. 

In conclusion, I am grateful for the attention this committee is giving to fetal surgery. Though not without significant risk, it provided a ray of hope when we were 

in a very dark place. 

Senator BROWNBACK. Thank you, Mrs. Armas. 

Mr. Armas, love to hear your testimony. 

STATEMENT OF ALEX ARMAS, PARENT, VILLA RICA, GEORGIA 

Mr. ARMAS. Good afternoon. 

My name is Alex Armas, and I’m the father of a three-year-old 

child with spina bifida who underwent corrective fetal surgery at 

Vanderbilt University in 1999. Thank you for the opportunity to be 

here today and to share with you the impact that this fetal surgery 

process had on our family. 

In early 1999, my wife and I learned that we were expecting our 

first child. Although we were thrilled at the hope of finally having 

a baby, our happiness was soon overshadowed when we were told 

that our baby had spina bifida. 

5 

As it was initially explained to us, our baby would likely suffer 

from brain malformations, hydrocephalus, which is excess fluid 

pressure on the brain, incontinence, inability to walk, learning deficiencies, and perhaps even problems swallowing or breathing. The 

doctor painted a grim picture for us and stopped just short of suggesting an abortion. 

It is every parent’s worst nightmare to learn that something’s 

wrong with your child, and we were initially devastated. However, 

our view was that after years of trying to conceive, this was the 

baby that God chose to give us. In our mind, this was not a 15- 

week-old fetus; but, rather, was our new son, Samuel Armas. Thus, 

abortion was never an option for us. To the contrary, my wife and 

I set out to learn about spina bifida and what options were available to us and Samuel. 

We soon heard about the maternal fetal surgery program for 

spina bifida that was offered at Vanderbilt University. After being 

presented with details of the procedure, including past successes, 

inherent risk of prematurity, my wife and I had a difficult decision 

to make. After weighing the substantial risks and the possible lifelong benefits, past surgery successes, and after much prayer, we 

decided to go ahead and have the surgery. In our minds, we would 

not have deprived an already-born son of a similar life-improving 

procedure with similar risks. 

We were particularly struck during this process by those who 

ethically challenged us on risking our baby’s life for a life-improving procedure, while we would have been supported should we have 

elected to legally end his life. 

When our son underwent fetal surgery, he was 21 weeks old 

gestationally. His brain was not developing correctly due to a 

Chiari malformation, and had enlarged ventricles due to worsening 

hydrocephalus. Immediately after the surgery, the hydrocephalus 

stopped increasing and started to slowly decrease. By the time 

Samuel was born, 15 weeks later, his brain malformation had reversed, and the hydrocephalus had mostly disappeared. He did not 

require a shunt to drain fluid from his brain, which is very common among children with spina bifida. This was of considerable 

benefit to Samuel, because shunts are commonly plagued with 

blockages, with infections, and can require a child to have multiple 

brain surgeries in the first year of life. 

The benefit of the in utero procedure was that it allowed continued development inside the womb, where conditions are ideal for 

problems to stabilize, or, in Samuel’s case, even reverse, to some 

degree. This was particularly evident in neurological benefit to 

Samuel. 

We’ve learned that children with spina bifida have an average 

shunt rate of approximately 70 to 95 percent, depending on the 

level of the lesion. With corrective fetal surgery for spina bifida, 

this average drops by half and is between 20 to 50 percent. Fetalsurgery children also exhibit less kidney damage, lower bladder infection rates, and, in some cases, improved leg function by up to 

two neurologic levels, or spine levels. 

Currently, the National Institute of Health is conducting trials, 

as you mentioned, to evaluate corrective fetal surgery for spina 

bifida. It’s our hope that further clinical studies will be supported 

6 

so that future parents facing circumstances such as we did will be 

better equipped to make educated decisions about medical alternatives for birth defects. 

Continued studies and increased awareness of intrauterine surgical intervention will also increase acceptance among insurance 

companies. We were fortunate, in that our insurance provider, at 

the time, had investigated the economic benefits of fetal surgery 

and had decided to cover all of our costs. However, many other insurance companies are still reluctant to cover fetal surgery. And, 

subsequently, this leaves an enormous financial burden on families 

who are already struggling with what to do with their pregnancy. 

Increased awareness and supportive advances in fetal surgery 

are critical to future families and their unborn babies. Progress in 

this field is not only improving lives, but it is also saving lives by 

representing an option, an alternative, a hope for parents who may 

otherwise choose to end their pregnancy. Most people think, ‘‘This 

could never happen to me.’’ But it can, and it did for us. Having 

options like fetal surgery can turn a family’s initial perception of 

hopelessness into an outlook of hope where the little victories of life 

are celebrated. We’ve seen living proof of this in our son. 

Today, Samuel is nearly 4 years old and has not had to endure 

the surgeries that are normally common for most children with 

spina bifida. He is walking with leg braces, is cognitively normal, 

and loves looking for bugs. We’re very grateful for his progress and 

for the obvious benefits that he’s had from fetal surgery. 

We’re also very thankful for the Subcommittee’s consideration of 

advances in this field and hope that it’ll see the true value in its 

progress. 

Thank you. 

[The prepared statement of Mr. Armas follows:] 

PREPARED STATEMENT OF ALEX ARMAS, PARENT, VILLA RICA, GEORGIA

Good afternoon. My name is Alex Armas and I am the father of a 3 year old child 

with spina bifida who underwent corrective fetal surgery at Vanderbilt University 

in 1999. 

Thank you for the opportunity to be here today and share with you the impact 

fetal surgery has had on our family. 

In early 1999, my wife and I learned that we were expecting our first child. Although we were thrilled at the hope of finally having a baby, our happiness was 

soon overshadowed when we were told that our baby had spina bifida. 

As it was initially explained to us, our baby would likely suffer from brain malformations, hydrocephalus (excess fluid pressure on the brain), incontinence, inability to walk, learning deficiencies, and perhaps even problems swallowing or breathing. The doctor painted a grim picture for us and stopped just short of suggesting 

an abortion. 

It is every parent’s worst nightmare to learn that something is very wrong with 

your child and we were initially devastated. However, our view was that after years 

of trying to conceive, this was the baby God chose to give us. In our mind, this was 

not a 15 week old fetus, but rather was our new son, Samuel Armas. Thus, abortion 

was never an option for us. To the contrary, my wife and I set out to learn about 

spina bifida and what options were available to us, and Samuel. 

We soon heard about the maternal-fetal surgery program for spina bifida that was 

offered at Vanderbilt University. After being presented with details of the procedure 

including past successes and inherit risks of prematurity, my wife and I had a difficult decision to make. After weighing the substantial risks, the possible life-long 

benefits, past surgery successes and much prayer, we decided to have the surgery. 

In our minds, we would not have deprived an already-born son of a similar life-improving procedure with similar risks. 

7 

We were particularly struck by those who ethically challenged us on risking our 

baby’s life for a life-improving procedure, while we would have been supported 

should we have decided to legally end his life. 

When our son underwent fetal surgery, he was 21 weeks old gestationally. His 

brain was not developing correctly due to a Chiari malformation and had enlarged 

ventricles due to worsening hydrocephalus. Immediately after surgery, the hydrocephalus stopped progressing and started to slowly decrease. 

By the time Samuel was born, fifteen weeks later, his brain malformation had reversed and the hydrocephalus had mostly disappeared. He did not require a shunt 

to drain fluid from the brain, which is very common among children with spina 

bifida. This was of considerable benefit since shunts are commonly plagued with 

problems such as blockages and infections which may require multiple brain surgeries during the first years of life. 

The benefit of the in utero procedure was that it allowed continued development 

inside the womb where conditions are ideal for problems to stabilize, or as in Samuel’s case, even reverse to some degree. This was particularly evident in neurological 

benefit. 

We have learned that children with spina bifida have an average shunt rate of 

approximately 70 percent to 95 percent, depending on lesion level. With corrective 

fetal surgery for spina bifida, this average drops by half and is between 20 percent 

to 50 percent. Fetal surgery children also exhibit less kidney damage, lower bladder 

infection rates, and in some cases improved leg function by up to two neurologic levels. 

Currently the National Institute of Health (NIH) is conducting trials to evaluate 

corrective fetal surgery for spina bifida. It is our hope that further NIH studies will 

be supported so that future parents facing circumstances such as we did, will be 

better equipped to make educated decisions about medical alternatives for birth defects. 

Continued studies and increased awareness of intrauterine surgical intervention 

will also increase acceptance among insurance companies. We were fortunate in that 

our insurance provider at the time had investigated the economic benefits of fetal 

surgery and decided to cover all of our medical costs. However, many other insurance companies are still reluctant to cover fetal surgery. This leaves an enormous 

financial burden on families who are already struggling with what to do with their 

pregnancy. 

Increased awareness and support of advances in fetal surgery are critical to future 

families and their unborn babies. Progress in this field is not only improving lives, 

but is also saving lives by representing an option, an alternative, a hope for parents 

who may otherwise choose to end their pregnancy. Most people think ‘‘this could 

never happen to me’’, but it can, and it did for us. Having options in fetal surgery 

can turn a family’s initial perception of hopelessness into an outlook of hope and 

a life where little victories are celebrated and cherished. 

We have seen living proof of this in our son. Today Samuel is nearly 4 years old 

and has not had to endure the surgeries that are normally common for most children with spina bifida. He is walking with leg braces, is cognitively normal, and 

loves looking for bugs. We are very grateful for his progress and for the obvious benefits he has had from fetal surgery. 

We are also thankful for the Subcommittee’s consideration of advances in intrauterine medical procedures and hope it will see the value in its progress. 

Senator BROWNBACK. Well, I’m thankful for you to be here to testify today, because hopefully you will help give hope to a number 

of parents who are caught in a very similar circumstance. 

I’ll have some more questions for you a little bit later on. 

Dr. Thorpe, would you describe for us the procedure that we’re 

talking about here and the nature of it and the progress that’s 

being made? 

8 

STATEMENT OF JAMES A. THORP, M.D., ASSOCIATE DIRECTOR, 

REGIONAL PERINATAL CENTER, SACRED HEART WOMEN’S 

HOSPITAL AND CLINICAL PROFESSOR, DEPARTMENT OF 

OBSTETRICS AND GYNECOLOGY, UNIVERSITY OF FLORIDA 

AT PENSACOLA 

Dr. THORP. Senator Brownback, other Members of the Committee, and members and guests, thank you very much for the 

privilege of presenting my testimony in the U.S. Senate. 

My name is Jim Thorp. I’m 50 years old. I am a maternal fetal 

medicine specialist, and am privileged to have worked with unborn 

children as my patients for many years. A maternal fetal medicine 

specialist is an obstetrician/gynecologist who has completed 2 to 3 

years of additional formal education and clinical experience with an 

American Board of Obstetrics and Gynecology approved maternal 

fetal medicine fellowship. Members of our Society for Maternal 

Fetal Medicine, SMFM, have advanced knowledge of the obstetrical, medical, genetic, and surgical complications of pregnancy and 

their effects on both the mother and the fetus. My career has been 

focused on the child within the womb as a patient. 

I completed my fellowship in maternal fetal medicine in 1988, 

and began practice at St. Luke’s Hospital of Kansas City, affiliated 

with the University of Missouri, Kansas City. In 2001, I relocated 

to practice at Sacred Heart Women’s Hospital, affiliated with the 

University of Florida at Pensacola. 

Now, my particular expertise involves what I would refer to as 

closed maternal fetal surgical procedures. That is, procedures that 

do not involve a major maternal surgery that opens the womb. 

During my maternal fetal medicine career, I have performed in excess of 250 such procedures, including fetal blood samplings, fetal 

transfusions, decompressions of certain bodily cavities, such as the 

urinary tract, among others. I have also directed clinical research 

and published extensively in my specialty. 

The first fetal surgery should be and is credited to Sir Albert 

William Liley in 1963. He developed the technique for diagnosing 

and treating fetuses suffering from anemia as a result of Rh disease. He is known as the ‘‘Father of Fetology,’’ and was an ardent 

advocate of the rights of the child within the womb. Dr. Liley said, 

‘‘As a doctor, I regard the unborn child as my patient, and protect 

and respect his life as I would the life of any other patient.’’ From 

my clinical experience, I am convinced that unborn children are individuals and human beings who are capable of receiving and responding to medical care and who should have legal protection. 

It is extremely difficult not to see the fetus as a child before birth 

with the same value as a child after birth, especially after one sees 

her smiling, grimacing, moving, sleeping, yawning, urinating, 

stretching, sucking a thumb, as well as responding to pain from 

needle sticks. 

When a fetus is suspected of having severe anemia, the operating 

team and I use an ultrasound to guide a needle through the mother’s abdomen, through the uterus, into the one of the baby’s small 

blood vessels. If severe fetal anemia is confirmed by immediate 

blood testing within the operating room, I will transfuse the baby 

with donor blood, specially prepared. Without such a transfusion, 

the fetus will likely die or deliver severely premature, with signifiVerDate Nov 24 2008 06:28 May 08, 2014 Jkt 075679 PO 00000 Frm 00012 Fmt 6633 Sfmt 6601 S:\GPO\DOCS\87755.TXT JACKIE
9 

cant ramifications. I’ve done this as early as 19 weeks gestation, 

with perfect outcomes. 

As endoscopic and laser technology increases, the surgical correction of other problems, including twin-twin transfusion syndrome, 

is now being performed and has been for some years. The NIH is 

currently funding the so-called MOMS study, which is a $25 million project at three centers, which is looking at the repair of spina 

bifida, as Samuel had, in a controlled prospective trial. 

Another technique that is currently under investigation, repair, 

includes diaphragmatic hernia, congenital defect in the diaphragm, 

removal of many fetal tumors, and even balloon angioplasty of certain valves within the fetus within the womb. Near scar-free repair 

of cleft palate and lip can also be performed. 

Thomas Jefferson said, ‘‘The care of human life, and not its destruction, is the first and only legitimate object of a good government.’’ The United States is a world leader in advanced medical 

study, and this includes research for the youngest and the most innocent of our patients, those still within the womb. I believe nations, societies, and governments will ultimately be judged by the 

way that they treat their weakest, their most vulnerable, their 

most innocent, including the child within the womb. 

I will close with a quote from just this past June 9, the lead article in Newsweek by Claudia Kalb. And I quote, ‘‘No matter what 

legislatures, activists, judges, or even individual Americans decide 

about fetal rights, medicine has already granted unborn babies a 

unique form of personhood, as patients.’’ 

Thank you. 

[The prepared statement of Dr. Thorp follows:] 

PREPARED STATEMENT OF JAMES A. THORP, M.D., ASSOCIATE DIRECTOR, REGIONAL

PERINATAL CENTER, SACRED HEART WOMEN’S HOSPITAL AND CLINICAL PROFESSOR, DEPARTMENT OF OBSTETRICS AND GYNECOLOGY, UNIVERSITY OF FLORIDA AT

PENSACOLA

Thank you very much for the privilege of presenting my testimony in the United 

States Senate. My name is Jim Thorp and I am 50 years of age. I am a MaternalFetal Medicine Physician Specialist and am privileged to have worked with unborn 

children as my patients for many years. A Maternal-Fetal Medicine specialist is an 

obstetrician/gynecologist who has completed two to three years of additional formal 

education and clinical experience within an American Board of Obstetrics and Gynecology approved Maternal-Fetal Medicine Fellowship Program. Members of the Society for Maternal Fetal Medicine (SMFM) have advanced knowledge of the obstetrical, medical, genetic, and surgical complications of pregnancy and their effects on 

both the mother and fetus. My career has focused upon the child within the womb 

as a patient. I completed my Fellowship in Maternal Fetal Medicine in 1988 and 

began practice at St. Luke’s Hospital of Kansas City, affiliated with the University 

of Missouri at Kansas City. In 2001 I relocated to practice at Sacred Heart Women’s 

Hospital, affiliated with University of Florida at Pensacola. My particular area of 

expertise involves closed maternal fetal surgical procedures, that is, procedures that 

do not involve a major maternal surgery to open the womb. During my Maternal 

Fetal Medicine career I have performed in excess of 250 such procedures including 

fetal transfusions, urinary decompressions, fetal blood samplings and others. I have 

also directed clinical research and published extensively in my specialty. 

The first fetal surgery is credited to Sir Albert William Liley in 1963. He developed the technique for diagnosing and treating fetuses suffering from anemia as a 

result of Rh disease. He is known as ‘‘the father of fetology’’, and was an advocate 

for the rights of the child within the womb. Dr. Liley said, ‘‘As a doctor I regard 

the unborn child as my patient and protect and respect his life as I would the life 

of any other patient. From my clinical experience I am convinced that unborn children are individuals and human beings who are capable of receiving and responding 

to medical care and who should have legal protection.’’ 

10 

It is extremely difficult not to see the fetus as a child before birth with the same 

value as a child after birth, especially after one sees her smiling, grimacing, moving, 

sleeping, yawning, stretching, sucking a thumb, as well as responding to pain from 

needle sticks. When a fetus is suspected of having severe anemia the operating team 

and I use an ultrasound to guide a needle through the mother’s abdomen into one 

of the baby’s blood vessels. If severe fetal anemia is confirmed by immediate blood 

testing in the operating room, I will transfuse the baby with donor blood. Without 

such a transfusion, the fetus will die. I have done this as early as 19 weeks gestation with perfect outcomes. 

As endoscopic and laser technology increased, the surgical correction of twin-totwin fetal transfusion syndrome is now being performed. The NIH is currently funding the MOMS trial, which is investigating the repair of spina bifida within the 

womb. Another technique that is currently under investigation includes repair of diaphragmatic hernia, removal of fetal tumors, and even balloon angioplasty of valves 

within the fetal heart. Near scar free repair of cleft palate/lip may also be possible. 

Thomas Jefferson said, ‘‘The care of human life, and not its destruction is the 

first, and only legitimate object of good government’’. The United States is the world 

leader in advanced medical study and this includes research for the youngest and 

most innocent of our patients, those still within the womb. I believe nations, societies and governments will ultimately be judged by the way that they treat their 

weakest, their most vulnerable and their most innocent, including the child within 

the womb. I will close with a quote from the June 9th Newsweek article by Claudia 

Kalb: ‘‘No matter what legislators, activists, judges or even individual Americans decide about fetal rights, medicine has already granted unborn babies a unique form 

of personhood-as patients.’’ 

Senator BROWNBACK. Thank you very much, Dr. Thorp. Powerful 

testimony. I didn’t realize we could do all those things and those 

are taking place. I look forward to probing into those various surgeries that are occurring now. 

Mr. Clancy, you’re a photographer. We don’t usually have photographers testify in front of the Senate, although—— 

Mr. CLANCY. How about photojournalists? 

Senator BROWNBACK. Particularly photojournalists. But you’ve 

got some interesting photographs that you wanted to share with 

us. 

STATEMENT OF MICHAEL CLANCY, PHOTOGRAPHER, 

ROSCOE, ILLINOIS 

Mr. CLANCY. Well, like you said, my name is Michael Clancy, and 

I appreciate having the opportunity to take part in the legislative 

process of our great country. 

As a veteran photojournalist in Nashville, Tennessee, I was hired 

by USA Today to photograph a spina bifida corrective surgical procedure. It was to be performed on a child 21 weeks in utero, at 

Vanderbilt University Medical Center. At that time, in 1999, 21 

weeks in utero was the earliest that the surgical team would consider for surgery. The worst possible outcome would be that the 

surgery would cause premature delivery, and no child born earlier 

than 23 weeks had survived. 

The tension could be felt in the operating room as the surgery 

began. A typical C-section incision was made to access the uterus, 

which was then lifted out and laid at the junction of the mother’s 

thighs. The entire procedure would take place within the uterus, 

and no part of the child was to breach the surgical opening. The 

position of the child was adjusted by gently manipulating the outside of the uterus. 

The entire surgical procedure on the child was completed in 1 

hour and 13 minutes. When it was over, the surgical team 

11 

breathed a sigh of relief, as did I. As the doctor asked me what 

speed of film I was using, out of the corner of my eye I saw the 

uterus shake, but no one’s hands were near it. It was shaking from 

within. Suddenly, an entire arm thrust out of the opening and 

pulled back, until just the little hand was showing. The doctor 

reached over and lifted the hand, which reacted and squeezed the 

doctor’s finger. As if testing for strength, the doctor shook the tiny 

fist. I took the picture. Wow. It happened so fast that the nurse 

standing next to me asked, ‘‘What happened?’’ ‘‘The child reached 

out,’’ I said. ‘‘Oh, they do that all the time,’’ she responded. 

The surgical opening to the uterus was closed, and the uterus 

was then put back into the mother, and the C-section opening was 

closed. 

It was 10 days before I knew if the picture was even in focus. 

To ensure no digital manipulation of images before they see them, 

USA Today requires that film be submitted unprocessed. When the 

photo editor finally phoned me, he said, ‘‘It’s the most incredible 

picture I’ve ever seen.’’ 

When I first saw the picture I took that day, I said to myself, 

‘‘I have captured the earliest interaction ever recorded,’’ proof that 

at 21 weeks in utero a child is a reactive human being. Four years 

later, the story of Samuel Armas has become legend and can no 

longer be ignored. The picture originally known as ‘‘Fetal Hand 

Grasp’’ has been renamed by the people as ‘‘The Hand of Hope,’’ 

hope for a generation that will embrace the knowledge that new 

technology brings, a generation that will demonstrate the courage 

to acknowledge a living human being’s struggle to survive. 

Samuel Armas had made more of an impact on the world before 

he was born than most of us make in a lifetime. 

Thank you very much. 

[The prepared statement of Mr. Clancy follows:] 

PREPARED STATEMENT OF MICHAEL CLANCY, PHOTOGRAPHER, ROSCOE, ILLINOIS

‘‘STORY OF THE ‘FETAL HAND GRASP’ PHOTOGRAPH’’ 

As a veteran photojournalist in Nashville, Tennessee, I was hired by USA Today 

newspaper to photograph a spina bifida corrective surgical procedure. 

It was to be performed on a child, twenty-one weeks in utero, at Vanderbilt University Medical Center. At that time, in 1999, twenty-one weeks in utero was the 

earliest that the surgical team would consider for surgery. The worst possible outcome would be that the surgery would cause premature delivery, and no child born 

earlier than twenty-three weeks had survived. 

The tension could be felt in the operating room as the surgery began. A typical 

C-section incision was made to access the uterus, which was then lifted out and laid 

at the junction of the mother’s thighs. The entire procedure would take place within 

the uterus, and no part of the child was to breach the surgical opening. The position 

of the child was adjusted by gently manipulating the outside of the uterus. The entire surgical procedure on the child was completed in 1 hour and thirteen minutes. 

When it was over, the surgical team breathed a sigh of relief, as did I. As a doctor 

asked me what speed of film I was using, out of the corner of my eye I saw the 

uterus shake, but no one’s hands were near it. It was shaking from within. 

Suddenly, an entire arm thrust out of the opening, then pulled back until just a 

little hand was showing. The doctor reached over and lifted the hand, which reacted 

and squeezed the doctor’s finger. As if testing for strength, the doctor shook the tiny 

fist. Samuel held firm. I took the picture. Wow! 

It happened so fast that the nurse standing next to me asked, ‘‘What happened?’’ 

‘‘The child reached out,’’ I said. ‘‘Oh, they do that all the time,’’ she responded. The 

surgical opening to the uterus was closed and the uterus was then put back into 

the mother and the C-section opening was closed. It was ten days before I knew if 

12 

the picture was even in focus. To ensure no digital manipulation of images before 

they see them, USA Today requires that film be submitted unprocessed. When the 

photo editor finally phoned me he said, ‘‘It’s the most incredible picture I’ve ever 

seen.’’ 

Senators, when I first saw the picture I took that day, I said to myself, I have 

captured the earliest interaction ever recorded. Proof that at twenty-one weeks in 

utero the child is a reactive human being. Four years later, ‘‘The Story of Samuel 

Armas’’ has become legend, and can no longer be ignored. The picture originally 

known as, ‘‘The Fetal Hand Grasp,’’ has been renamed by the people as, ‘‘The Hand 

of Hope.’’ Hope for a generation that will embrace the knowledge that new technology brings. A generation that will demonstrate the courage to acknowledge a living human being’s struggle to survive. 

Samuel Armas had made more of an impact on this world before he was born, 

than most of us make in a lifetime. 

Thank you. 

MICHAEL CLANCY, 

Roscoe, Illinois. 

Senator BROWNBACK. That’s beautiful testimony. Do you have a 

picture, one of the pictures that you took? 

Mr. CLANCY. There’s a poster in the—I have some right behind 

you. 

Senator BROWNBACK. Was that the one that appeared in—I remember, in USA Today, seeing a picture in—— 

Mr. CLANCY. It’s been in USA Today now four times. It was in 

the June 9 issue of Newsweek. It’s been around the world. It’s been 

on television shows. It’s been embraced by the pro-life community, 

the religious community. And—— 

Senator BROWNBACK. And this is the picture? 

Mr. CLANCY. That’s the picture. When I first took the picture, 

most of the picture agencies said, ‘‘It’s too graphic for the United 

States, but it’ll be great overseas.’’ 

[Laughter.] 

Mr. CLANCY. And that’s kind of what’s happened. It took 4 years 

for it to run in a secular publication, in Newsweek. 

Senator BROWNBACK. In the United States it took—— 

Mr. CLANCY. It took 4 years for that picture—— 

Senator BROWNBACK.—four years before anybody would run it? 

Mr. CLANCY. Right. 

Senator BROWNBACK. Why? They said it—— 

Mr. CLANCY. Because of the story of Samuel. It has become legend. People are e-mailing the story about Samuel reaching out and 

squeezing the doctor’s finger, and they’re saying, ‘‘You’ve got to see 

this picture.’’ And it’s like it can’t be ignored any longer. It has 

been amazing to me. I created a website, because I felt that I needed to do the right thing with this picture, it’s so powerful. I give 

it to pro-life groups, religious groups, and church groups. Anyway, 

it has just been phenomenal. 

In the last year, I’ve had 250,000 visitors to the Website. I answer e-mails. Every night I go home, I have 20 or 30 e-mails about 

the picture. People are asking me to come speak somewhere. And 

I don’t feel that I’m worthy to go speak somewhere. I just promote 

the picture. It has just been an amazing moment. 

And I’m still in shock that at 21 weeks in utero, the child was 

a reactive human being. And we see what we want to see. The political climate just, you know, allows you to see what you want to 

see and not do something about it. I think each person has to take 

it into their own hand and do something about it. 

13 

Senator BROWNBACK. When did this picture first appear in publication, then, overseas? 

Mr. CLANCY. It was published January 7—January 9 in the Tennessean and in USA Today. Then it ran overseas in October in 

France. They ran a four-page layout in a French magazine. And 

then it took off like wildfire, and you could see it go country to 

country. It was pretty amazing. 

It’s gone around the world, like, three or four different times. 

Whenever it hits a new country, I get e-mails in languages I can’t 

read. 

[Laughter.] 

Mr. CLANCY. I go to translate.com. I cut and paste, and I get a 

crude translation of what they’re trying to ask me. Most people are 

wanting a copy of the picture, how can they find out more about 

it. It has just been an amazing thing for me. 

Senator BROWNBACK. That is an amazing picture. 

Mr. CLANCY. Thank you. 

Senator BROWNBACK. Let’s see Samuel? Is he here? Is he willing 

to come forward and testify? 

Hi, Samuel. How are you today? 

SAMUEL ARMAS. Fine. 

Senator BROWNBACK. Do you like to look for bugs? 

SAMUEL ARMAS. Yes, sir. 

Senator BROWNBACK. I’ll bet you’re good at catching those. And 

butterflies? 

SAMUEL ARMAS. Caterpillars. 

Senator BROWNBACK. What’s that? 

Mrs. ARMAS. Caterpillars. 

Senator BROWNBACK. Caterpillars, yes. I’ll bet you like those. 

You don’t eat them, do you? 

SAMUEL ARMAS. No. 

Senator BROWNBACK. No. We don’t want to do anything like that. 

What do you like to play? 

SAMUEL ARMAS. The cars. 

Senator BROWNBACK. With cars? Oh. And what do you have on 

your shirt? You’ve got several things on your shirt there. What do 

you have? 

SAMUEL ARMAS. A butterfly. 

Senator BROWNBACK. Oh, that looks nice. 

SAMUEL ARMAS. A grasshopper. 

Senator BROWNBACK. Oh. 

SAMUEL ARMAS. A lunar moth. 

Senator BROWNBACK. A lunar moth. Well, we’re going to get scientific on me, aren’t you. 

[Laughter.] 

Senator BROWNBACK. You’re not just going to let me slide with 

a regular—— 

Mr. ARMAS. And that one, what’s that one? 

SAMUEL ARMAS. A spider. 

Senator BROWNBACK. And a spider. 

Mr. ARMAS. Do we touch spiders? 

SAMUEL ARMAS. No. 

Senator BROWNBACK. You don’t touch any spiders? Why don’t you 

touch spiders? 

14 

SAMUEL ARMAS. They might bite. 

Senator BROWNBACK. Yes. Those can be pretty rough, can’t they? 

Now, how old are you? 

SAMUEL ARMAS. Three. 

Senator BROWNBACK. You’re three? 

SAMUEL ARMAS. Yes, sir. 

Senator BROWNBACK. Oh. Have you seen this picture of you? 

SAMUEL ARMAS. Yes, sir. 

Senator BROWNBACK. Well, you’re offering a lot of hope to people. 

Mrs. ARMAS. Tell him about that picture. 

Mr. ARMAS. Who’s in that picture? 

SAMUEL ARMAS. I’m Samuel. 

Senator BROWNBACK. And what did they do? What did they fix? 

SAMUEL ARMAS. They fixed my boo-boo. 

[Laughter.] 

Senator BROWNBACK. And you feel much better now that they 

fixed your boo-boo? 

SAMUEL ARMAS. Yes. 

Senator BROWNBACK. Thank you very much. Thank you very 

much. That is remarkable. 

And tell me, Dr. Thorp, you’ve been in this field for a number 

of years now, what’s the state of play in this field, and what have 

you seen over the last 5, 10 years? What the Armas’s have done, 

is this a radical surgery now within the field, or is this—or is it 

we’re getting this one down and it’s moving on forward? 

Dr. THORP. Well, sir—— 

Senator BROWNBACK. Pull that microphone up, if you would. 

Dr. THORP.—in my specialty, in the Society of Maternal Fetal 

Medicine, what we’ve witnessed over the last 10 years is 

unheralded incredible opportunities to treat the fetus in the womb, 

as you’ve seen in front of you. I think that this is still investigational, and that’s why we’re so grateful that our government has 

provided such resources through the NIH to actually do the study, 

where many children will actually be randomized in utero before 

the surgery to either standard after-birth repair versus the in utero 

repair. But the opportunities in the future are unlimited for treating and fixing the fetus in utero. 

Senator BROWNBACK. Now, tell me, where would Samuel be 

today if they had not gone through the in utero surgery? 

Dr. THORP. Quite honestly, it’s very difficult to say, Senator, because we’re looking at one case. He could be the same, or he could 

be better, or he could be worse. And that’s why the NIH is conducting the trial that they’re doing. 

It’s a moving target, Senator, because as time progresses and institutions get more experienced, their control changes. So to use a 

historical control is very dangerous in this type of a situation 

where there’s a moving improvement in outcomes. 

Senator BROWNBACK. But we generally think, in medicine, the 

sooner you can catch something and deal with it, the better off you 

are, and I don’t know if that holds as well in in utero surgery. 

Dr. THORP. Absolutely, it does. Theoretically, there’s a tremendous plasticity of fetal cells, in terms of inflamation and scarring. 

The two-hit hypothesis with spina bifida is that the initial problem 

that causes the defect is the initial insult, but then the ongoing inVerDate Nov 24 2008 06:28 May 08, 2014 Jkt 075679 PO 00000 Frm 00018 Fmt 6633 Sfmt 6601 S:\GPO\DOCS\87755.TXT JACKIE
15 

sult is the exposure to the nerve cells of the brain and spinal cord 

to amniotic fluid, which is thought to cause more damage. So the 

theory then is that if that nerve tissue, the spinal cord, is protected 

and closed in the uterus, then it won’t take that second hit, the socalled second-hit hypothesis. But that’s yet to be proven in prospective trials. 

Senator BROWNBACK. We had a witness in here—this has been 

a couple of months ago—of a young man that was cured of sickle 

cell anemia. He was 17 years old. What was his name? Keone 

Penn. Keone Penn was a young man, 17 years old, and the physician that was here claimed that if they can catch the sickle cell 

anemia even in the womb, that they were going to have a much 

greater chance of being able to deal with developmental problems. 

Now, they didn’t catch his until much later, and he, of course, had 

a lot of developmental problems because of the lateness that they 

caught it. But with umbilical cord blood transfusion, he was cured 

of it. 

Dr. THORP. Yes, sir. 

Senator BROWNBACK. Are you familiar with those taking place, 

as well? 

Dr. THORP. I’m familiar with those cases. And we’re in the embryonic stage. But you’re absolutely correct. There are a number of 

diseases that have the potential of being completely cured by putting stem cells from cord blood into a fetus at 18 or 19 weeks, and 

that fetal immune system will actually empower it to be part of 

itself and will grow clones of normal blood cells throughout the life, 

instead of sickle cell. Also, a similar type of disease with severe 

combined immunodeficiency has also, I understand, been successfully performed. 

Senator BROWNBACK. At what age are we looking at for the 

youngest treatment in the womb? What do you see? The child’s 

going to have to develop to a certain level before you can detect and 

work on issues that come forward. I mean, you mentioned 

angioplasties being done, and cleft palates being fixed without a 

sign. What ages in the womb are we talking about that will be 

probably the youngest age that we will get to in performing different types of surgeries? 

Dr. THORP. I don’t know that there will be a limit. Technically, 

with ultrasound capability right now and with, for example, the 

standard needles that I use in my surgery, I’ve done a procedure 

as early as 19 weeks gestation successfully that otherwise the baby 

would have died. Now, that’s merely limited by the physical size of 

the umbilical vessel and also the size of the needle. But as new 

technologies, nanotechnologies—there’s a new da Vinci robotic device which is being tested, I understand, in Tennessee—great potential to lower that age. 

Senator BROWNBACK. That is amazing. 

The Armas family, this was quite a thing for you to do. When 

this first hit you that your child has spina bifida, and you described 

that situation, how much information was available to you that 

this surgery was a possibility at those early steps? 

Mrs. ARMAS. I am a labor and delivery nurse, and I live in a 

large city. We live just outside of Atlanta, and we didn’t know anything about it. My mother stumbled across Vanderbilt’s website 

16 

after we knew something was wrong. We didn’t quite know what 

it was. And my mother actually found their website, and that’s how 

we knew to ask about it. It wasn’t something that was commonly 

known to us. 

Senator BROWNBACK. So you just thought your options are to go 

ahead and have the child, and the child will be born with spina 

bifida, or abort the child, is the options that you were—— 

Mrs. ARMAS. Yes. 

Senator BROWNBACK.—that you were generally provided at that 

time? 

Mrs. ARMAS. Yes, the traditional repair is done immediately after 

birth. 

Senator BROWNBACK. Now, this is 3 years ago, going on four? 

Mrs. ARMAS. August 19—was four years ago was the—— 

Senator BROWNBACK. Four years ago. 

Mrs. ARMAS.—surgery. Yes. Samuel will be four in December. 

Senator BROWNBACK. He was throwing me off, because I thought 

he was four, and then when he said three. 

What about the situation now? My guess is you get contacted by 

a number of parents with similar problems. Are they getting more 

information—what’s available, what options are out there for 

them? 

Mrs. ARMAS. I think we are getting—and one of the reasons we 

agreed to have USA Today in the surgical suite was that we wanted to increase awareness of this surgery, because, like I said, we 

didn’t know anything about it, and we are getting some contacts 

from people who have seen the picture, and then even later found 

out they were carrying a child with spina bifida and remembered 

it and called us. 

But I still think, in talking to friends, it’s not widely accepted as 

a viable alternative. 

Senator BROWNBACK. Just not widely accepted as a viable alternative? 

Mrs. ARMAS. What I’m thinking of is, I have a co-worker who was 

diagnosed with a child with spina bifida. He’s less than a year old. 

And she talked to me, and I told her about fetal surgery. She came 

back, and she said, ‘‘Well, my doctor doesn’t think that’s a good 

idea.’’ And, you know—and so she subsequently didn’t look into it 

any further. 

In general, I think it’s still considered very risky and experimental, which is one reason we’re very grateful that they’re conducting trials now to bring some validity to the outcomes. 

Senator BROWNBACK. That would be the case, Dr. Thorp, on 

spina bifida. What about these other issues, like cleft palate, the 

angioplasty? My guess is you don’t have a—there isn’t another option available when you’re doing something like that on a child in 

the womb. 

Dr. THORP. There are no clinical trials, sir. This is only anecdotal, totally investigational, and it’s very possible at this point in 

time that we’re doing more harm than good. 

Senator BROWNBACK. On an angioplasty or a cleft palate repair? 

Dr. THORP. With all of these. 

Senator BROWNBACK. Because you just—you don’t have the 

standardized trials yet? 

17 

Dr. THORP. Absolutely correct. And, you know, as Julie mentioned, there are some significant drawbacks. She took significant 

risk to herself to try to help Samuel within the womb. Forty percent of the babies of the mothers that undergo this surgery will actually deliver prematurely, before 32 weeks. And, in many cases, 

that could actually be detrimental to the baby. So then not only 

will the baby have spina bifida at birth, but it will also have a double hit with the significant ramifications of extreme prematurity. 

So that’s a very serious thing. 

So when we’re looking at the risks, there’s also significant risks 

to mom. When you make a large incision in the uterus, her uterus 

could rupture and put her life at risk, as well. Not only for the last 

pregnancy, with Samuel, but also with this pregnancy, with Ethan. 

So before—our government, our NIH, our medical system is approaching this the right way, absolutely correct, we don’t want this 

widely available to everybody until we know for sure that we are 

doing no harm. Primum non nocere is part of our Hippocratic oath. 

That is, first do no harm. 

And it may that fetal surgery is here to stay and it’s only going 

to get better and better, but it may be that making a large incision 

in the uterus is not the way to go because it’s so dangerous for 

mother and baby. It may be that when we are developing our laser, 

our endoscopic technology, that this can all be done through a 

scope. And, in fact, it is being done investigationally at this time, 

attempted through a scope. 

Senator BROWNBACK. That would seem to me to be a way that 

it would be likely that this would develop, because that big incision 

in the womb is a—— 

Dr. THORP. Very dangerous. 

Senator BROWNBACK.—dangerous procedure and dangerous thing 

to do. Are we seeing that developing? The laparoscopic surgeries? 

Dr. THORP. Yes, sir, absolutely. There is a laparoscopic laser surgery that is now available for twin-twin transfusion syndrome. And 

twin-twin transfusion syndrome, for those of you who are not familiar with it, is a very common complication of identical twins. In 

fact, 10 or 15 percent of identical twins, as early as 15 to 20 weeks 

gestation, will have vascular connections which will cause severe 

complications in both twins. And there are at least, I believe, three 

centers that are actually going in and actually lasering the vascular connections between those two babies. Now, again, that’s controversial, it’s investigational, but it’s being done, and done successfully. 

Senator BROWNBACK. Mr. and Mrs. Armas, when you first saw 

the picture, how—I guess this was several days after the surgery 

that you first saw the picture—what did you think? 

Mr. ARMAS. Like Mr. Clancy, the first time we saw the photo was 

a good bit later, weeks later. And, in fact, we were planning, ‘‘OK, 

tomorrow morning is the USA Today. You need to get it at work.’’ 

And I got a copy, and her parents and our family got copies, and 

that’s the first time we saw it. And we were told that—basically 

what the picture entailed and about the hand, but it—without too 

much detail, we didn’t realize what had been captured on film until 

we saw it in the newspaper, and it was pretty significant to us. 

18 

Senator BROWNBACK. What did you feel at that time when you 

saw it? I mean, did you feel like this is a significant picture, as 

what Mr. Clancy described, this has made it around the world and 

touched lives and gave hope? I mean, you called the picture ‘‘The 

Hand of Hope.’’ 

Mr. CLANCY. Well, the people have kind of renamed it. That’s 

what it goes around now as an e-mail. It’s kind of like being mass 

e-mailed to people, and they titled it ‘‘The Hand of Hope.’’ 

Mr. ARMAS. What I first thought was, ‘‘That’s my boy.’’ Like we 

said, this was from very early on—we had wanted Samuel for so 

long, and he was finally here, and we were going to have him no 

matter what problems he came with. We were prepared, and the 

Lord was going to help us deal with that. But there he was, and 

that’s my first thought, is, you know, not only have we named him 

or come to know him or love him without even meeting him yet, 

but there he was on the film. And it was pretty amazing. 

Sometimes we are taken aback—as we went through this process, we got caught up in the process and kind of got used to it, but 

every once in awhile we would step back and think, ‘‘Can you believe we’re having fetal surgery?’’ And these are things that we 

might see on TV or read about, but we were actually participating 

in this. And the picture kind of brought that home to us. 

Do you have anything to add to that? 

Mrs. ARMAS. No. 

Senator BROWNBACK. What did you think when you first saw the 

hand of your child? 

Mrs. ARMAS. I was at home, on bedrest. He’s at work. My family 

is out. And they’re all calling me, telling me about the picture, and 

I hadn’t even seen it. I think it was sort of surreal, because the 

whole process—like he said, we were, sort of, concerned about our 

life and how it was going to change with just this child with this 

special need. And then seeing that I was put to sleep for this surgery, so, you know, there wasn’t a lot of that anxiety in the middle 

of the surgery. And it was almost easy to pretend that I had had 

my tonsils out or something. And then seeing that, you know, it 

was awesome. 

Senator BROWNBACK. Dr. Thorp, you mentioned you do a lot of 

actions not breaching into the womb, but drawing blood, other 

items, with the fetus. With a young child—what reaction do you get 

from that young child when you stick it with a needle? 

Dr. THORP. Senator, there’s no question that this is a human 

baby in the womb. It does all the things that I said in my testimony as early as 20 weeks. I will often have to paralyze a fetus 

because if there’s motion I will lose complete visibility of the target 

that I’m putting the needle at. So I will need to paralyze a fetus, 

much like you would be paralyzed in an operating room so that a 

surgeon and anesthesiologist could operate on you. 

So it’s very difficult to give that baby a shot. And I will usually 

try to give the baby a shot in the buttock with a smaller gauge needle. And it’s the exact same reaction that—if you have children or 

that Samuel has when they go to the doctor’s office and they have 

to get a shot. They pull away, and then you have to chase them 

in the womb with the needle. 

[Laughter.] 

19 

Senator BROWNBACK. He’s kind of—— 

Dr. THORP. There’s no question they feel it. 

Senator BROWNBACK. He’s kind of confined in there. I mean—— 

Dr. THORP. Yes, sir. 

Senator BROWNBACK.—you can catch him. 

Dr. THORP. There’s absolutely no question. It’s the same way that 

you would expect a child, a newborn, in a doctor’s office. It’s the 

same to me. It always has been. And to those of us who see the 

ultrasounds, and to the parents—I would dare say that Mr. and 

Mrs. Armas have absolutely no difference in their perception of 

Samuel outside of the womb and Ethan, who is in the womb. It’s 

the same precious life. 

Senator BROWNBACK. Does it vary on age? When you’re giving 

that child a shot, does it vary on age or at any of the age that 

you’re operating in there, the same pull-back reaction, pain being 

felt, sensations? 

Dr. THORP. The pull-back gets stronger beyond 19 weeks, but the 

first—the earliest I’ve transfused a fetus is 19 weeks, and I’ve gotten the same reaction. It’s—that baby will move away from the 

needle. It’s painful, just like we don’t like needles. 

Senator BROWNBACK. Our two youngest ones are both five, and 

we just did two shots to them for childhood diseases prevention, 

and it took five of us holding, shooting, to get all that done. I don’t 

suppose you have five—maybe you have to have five, but when 

you’re in that type of situation that would take a lot. But there’s 

a pain sensation that’s clearly there. 

I want to thank all of you for coming and for presenting this. 

This is a short hearing, but this is a powerful picture. And just like 

pictures like Iwo Jima, others that have changed the course of history when you see them, where they evoke a powerful emotion 

within us, and I like to think they evoke that powerful spirit within 

us that just says, ‘‘This is something,’’ that it touches. 

And I think, Mr. Clancy, what you’re seeing with this is just one 

of those. This is one of those powerful images that touch, and it 

touches people everywhere. 

And to the Armas family, thank you for being—for staying in 

there. I’m sure you didn’t think Samuel was going to be quite this 

famous this early. Maybe later on, but maybe not quite this early 

that he would be so famous. 

Did anybody else have anything else they wanted to add? 

Dr. Thorp? 

Dr. THORP. Sir, I would just say that Julie and Alex are really 

heroes. They’re really much—and Samuel—much like astronauts 

doing a first thing. They took a lot of risk for themselves, and they 

took a lot of risk, and it was the right thing to do. And only by the 

risk that they took can the rest of us be benefited, and they are 

to be congratulated and thanked for that. 

Senator BROWNBACK. Absolutely. Absolutely. You’re quite the heroes. And I think of all the parents out there that would be in a 

similar situation and looking for hope and now, you know, here’s 

a couple that have gone before them to give them hope. 

We have five children, and my wife has had miscarriages, too, 

and it’s—you give a lot of people a lot of hope in situations that 

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they can look at as being pretty dark and pretty difficult. So 

thanks for doing that. God bless you all. 

Thank you all for joining us here today. I appreciate particularly 

witnesses and the distances you’ve traveled and what you’ve 

shared. 

The hearing is adjourned. 

[Whereupon, at 3:25 p.m., the hearing was adjourned.] 

(21) 

A P P E N D I X 

PREPARED STATEMENT OF HON. FRANK R. LAUTENBERG, 

U.S. SENATOR FROM NEW JERSEY

In utero surgery—also known as fetal surgery—provides a real opportunity to improve the lives of children. Fetal surgery can offer hope to women who might otherwise give birth to children with potentially deadly or debilitating conditions such as 

spina bifida. It can save lives. 

Medical advances in fields such as fetal surgery are very positive developments, 

especially when they help women who want to bear children. 

There are exciting developments in another field that, like fetal surgery, could alleviate congenital birth defects and similar problems: stem cell research. 

That is why I have cosponsored Senator Feinstein’s bill that would prohibit 

human reproductive cloning—which just about everyone agrees is abhorrent—but 

would allow therapeutic cloning—that is, the cloning of cells for medical research, 

including stem cell research. 

I hope that Congress will continue to support the development of lifesaving treatments. 

The best way for Congress to show its support is to keep increasing the funding 

for the National Institutes of Health (NIH) by 8 to 10 percent each year, which is 

what the research community recommends. 

Of course, that will become increasingly difficult now that we are running budget 

deficits again but if we truly view the NIH and the research conducted under its 

auspices as a national priority, we will find a way to get it the money it needs. 

RESPONSE TO WRITTEN QUESTIONS SUBMITTED BY HON. FRANK R. LAUTENBERG TO

JAMES A. THORP, M.D. 

Background 

Question 1. As fetal surgery becomes more routine and medical technology continues to advance, there are concerns that doctors will make the fetus a patient at 

the expense of the mother’s autonomy. Thus far, the pre-viable fetus has been 

deemed a patient according to the woman’s decision to continue a pregnancy to viability and thus, to term. However, as medical technology makes the fetus more accessible to pediatric surgeons, perceptions of the fetus may change as the fetus begins to make serious claims for a right to nutrition, to protection, and to therapy. 

Should a fetus have the right to receive surgical treatment independently of the 

mother’s self-interest and legal rights? 

Answer. NO, under no circumstances should a fetus have the right to receive surgical treatment independently of the mother’s self-interest. A surgical intervention 

against the mother’s desire should never be done and in fact is considered a criminal offense (assault and battery). Even if future studies show that some fetal surgeries are life-saving (to the fetus) it will always involve risk to the mother. For this 

reason no mother should ever be coerced into a fetal surgical procedure that she refuses. Interestingly, even cesarean section to save a normal fetus cannot be imposed 

upon a mother against her will. It is my understanding that this has been tested 

in court. 

Question 2. Does a mother have the right to refuse a surgery because she is afraid 

of the risk such a surgery poses to herself? 

Answer. YES. Absolutely and unequivocally YES. At the present time the ‘‘open 

maternal-fetal surgery’’ which includes a large incision into the pregnant uterus 

poses significant risk to the mother (potentially life-threatening). In contrast, although the benefits to the fetus are promising, they remain unproven. Indeed, the 

surgery also poses significant risks to the fetus, including fetal death and prematurity. About 40 percent of mothers undergoing ‘‘open maternal-fetal surgery’’ 

will deliver 8 weeks or more premature, thus adding additional risk. Thus, at the 

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present time, many educated and wise couples may elect NOT to have open maternal-fetal surgery. 

RESPONSE TO WRITTEN QUESTION SUBMITTED BY HON. FRANK R. LAUTENBERG TO

MICHAEL CLANCY

Question. Does the doctor who performed the surgery (Dr. Joseph Bruner) share 

your account of the events that took place during the surgery? 

Answer. Thank you for your inquiry as to Dr. Bruner’s comments regarding the 

surgical procedure performed on Samuel Armas. 

Dr. Bruner’s first account of the events were published in the Tennessean Newspapers Sunday January 9, 2000 Issues Section. http://www.tennessean.com/sii/00/ 

01/09/vandyfeta109.shtml 

His statement: 

‘‘Depending on your political point of view, this is either Samuel Armas reaching out of the uterus and touching the finger of a fellow human, or it’s me pulling his hand out of the uterus . . . which is what I did.’’ 

Three months later Dr. Bruner told Maj McKenna, (reporter) at the Atlanta Journal Constitution: 

‘‘When Samuel’s hand appeared in the uterine opening, I impulsively reached 

out and lifted it,’’ he said. ‘‘It was a very human thing to do, to reach out and 

take someone’s hand.’’ http://www.nrlc.org/news/2000/NRL05/sam.html 

(Could not access the original article) 

Dr. Bruner reportedly told Time magazine Europe that when his finger was 

grasped it was the most emotional moment of his life, and that for an instant during 

the procedure he was just frozen, totally immobile: http://www.armybarmy.com/ 

sam-hand.html (Could not access the original article) 

My credibility and integrity as a journalist has been severely challenged by Dr. 

Bruner’s comments, but my version of the event has never changed. 

Æ