On the other hand, with the advances in immunology and maternal fetal medicine,
where a fetus that would maybe not survive the 22nd week or 25th week, now gets
to the nursery at the weight of 500-600 grams, stays in the nursery for a year
or two sometimes, because it's very small or stays in the hospital for long
periods and we are talking two or three babies at a time.
Then when it comes out, if there is significant handicap, we are talking year
after year after year of support, of teams of specialists taking care of these
babies. In short, we don't have the finite event of death, but we have maybe a
slow death of 20, 30 or 50 years, which could be much more devastating to the
whole family, devastating to society, to the sibling, devastating to the
economy and so forth. Because these monies are not then available to treat
other things that may be more important.
This puts you, as a doctor, in an incredible conflict, doesn't it?
When you deal with an infertile couple with infertility and multi-fetal
gestation, you have really three doctors dealing with it. First one, you have
the infertility doctor, and they make tremendous progress in getting people
pregnant. There is no limit on age, on time, they can always find a technique
that will respond to the need. You can be post-menopausal and get pregnant. So
they deal with that part and I must say they have been very successful.
Then we have the obstetrician or the specialist, the perinatologist--maternal
fetal medicine, as we call it. They have to deal with the pregnancy. We get
multi-fetal gestations and there are several ways to deal with it. If we get
them early enough, we discuss selective abortion or reduction of pregnancy with
the couple, and that is offered, but as you know from current events, it's not
unusual that couples will decline that and will end up with septuplets or
octuplets.
Once delivery has occurred, and again, prematurity is very common, it's rather
the rule in the exception, they are no longer our patient. Then we have two
separate patients. The mother who was the host, she's no longer a patient and
we are dealing with a neonatologist, who have no choice but to take the best
care of the premature babies ... there, I said before, there has been progress
made.
The only place where we made very little progress, is our part. The part that
is supposed to prolong the pregnancy. Here the prematurity rates have not gone
down substantially. We have just found no real answers, either pre-term labor
or prevention of prematurity. We are stuck in the middle, between the success
of the infertility people and between the progress made in the neonatal
[unit].
How do you feel about the infertility clinics?
... I sometimes think that the sub-specialty arrangement, where one person
gets you pregnant, the other person maintains your pregnancy, and the third
person--the neonatologist--then continues the pregnancy outside the womb, this
particular arrangement, while it's very good for science, it's not always good
for the client.
Because?
Because it's three different people, and everybody does their job to the best
of their ability, but we don't really communicate too much with each other and
the parents prior to the whole thing happening ... and [we] cannot make sure
that what we say is being heard. I'm not sure exactly how to make sure that
when they take their first infertility drug, they visit the nursery, at least
in their imagination.
I would have liked to had more doctors and patients, before they undertake this
treatment, maybe take a tour, just like you did today, see these small babies,
and maybe reduce the number of multi-fetal gestations, reduce the number of
reimplanted embryos and so forth, so that [they] will just try to reduce the
morbidity and mortality.
Michelle Whitcomb, one of the mothers in our FRONTLINE program, said that
she wasn't told anything about prematurity.
... I definitely believe she should have been. I'm almost sure she got it. I'm
certain that when she said she did not get it, that she does believe that she
did not get any information, because of maybe the way we give it. You just
don't hear certain things that, at the time, you're not open to accepting. I
can tell you that I have a talk with so many couples after infertility, and the
first thing I talk about is prematurity. The second thing I talk about is
prematurity, and the 10th thing I talk about is prematurity. And still
sometimes they just don't get it until it hits them. Even then, they think I
was maybe a little too optimistic in my description. So I'm almost sure that we
talked to them, but we don't verify that they heard us. I'm not sure exactly
how to do it, but it is a known phenomenon that you don't always hear what
you're told.
That's why you think they should see it?
I think they should see it. They should talk to other parents that went through
it, and should be given written materials to absorb ahead of time. As I said,
it's not that we don't know about it, but I don't think the communication is
really done well.
When you first heard about the septuplet birth and then about the octuplet
birth, how did you react?
I thought it was something less than happiness alone. Of course, the couple is
happy. You could see how delighted the both couples were. Nevertheless, I could
see also how there is a tremendous economic burden placed on either the
surroundings, either the insurance, the hospitals the nurseries and so forth
and we know we have limited resources.
Before one decides that $2 million or $3 million should go to pay care of
somebody's septuplets or octuplets--no way do I mean the care should be
withdrawn--but thought should be given to it before it becomes septuplets or
octuplets. I could use $2 million to give prenatal care to a large number of
women who get no prenatal care. None. Do we want to put $2 million into one
family's need or to pay, controlling somewhat better, and then pay more
attention to getting the same amount of money and give it to the needs of maybe
150 families who need this prenatal care. That debate needs to be on the table,
in society, in medicine, legislature, so forth and make some rational decisions
on this issue.
You are often faced with a [non]receptive audience and you have to say
particular [things] over and over again ... What is it that you are hammering
home ...
This is something I am faced with everyday in my office. I would tell a couple
congratulations for getting pregnant and these are the issues we face with
triplets or quadruplets. You need to think about the management plan. This is
the likelihood that it will interfere with your life, this is how life will
look later and so forth.
They come back the next time and I tell them, "Okay, what have you decided, are
you going with plan A, B or C?" And they look at me dumbfounded saying, "What
do you mean preterm labor treatment? What do you mean selective reduction?" As
if we never talked about it. So it is not at all uncommon that I, myself, am
faced with this particular issue of not hearing what I have to say.
And I do hand them the book. I have drawings of the uterus and the cervix that
I do each and every time I talk about it. They look at the picture, they say,
"This looks familiar, but what exactly did you say in conjunction with this
particular picture?" And this is just amazing.
If you start talking to them about how will life look at home with triplets,
which by the way I cannot talk much about, because I don't know how it will
look with triplets. Healthy triplets or sick triplets or one sick and two
healthy, who knows? That would be a good idea to show them, but I really don't
know much about it and I, myself, am guilty of not talking much about life
beyond pregnancy.
You use the term selective reduction. Can you explain in a very simple way
what that is?
Yes, selective reduction or aborting part of the pregnancy, namely termination,
if you have quadruplets, one or two of the four by a special procedure that is
popularly known as selective reduction. In essence, what we do is around 11 or
12 weeks after proper counseling of the dangers and complications that may
ultimately result in loss of the whole pregnancy, they receive under local
anesthesia, proper aseptic technique, under ultrasonographic guidance, a needle
is introduced into the uterus and then into the chest cavity and an
intracardiac injection of the embryo with potassium chloride or KCL, which then
stops the heart beat. Then the needle is withdrawn; thereby, leaving only the
desired number of embryos inside.
How do doctors feel about doing this procedure?
Everybody is very conflicted about it--the parents, the doctors, the ethics of
the procedure and so forth. This is a procedure that we are left with having to
do very unhappily, but there is just no choice here. Because when you are faced
with these multifetals, you know that if you reduce, you did not complicate the
life of all embryos. On the other hand, you gave them much better chance for
those embryos that were left inside and are allowed to continue the pregnancy.
So there is tremendous conflict here ... terminating life so that life can
continue longer elsewhere.
For in vitro fertilization [IVF] procedures, one could actually put in less
embryos, rather than more. Is that what infertility doctors should be
doing?
Serious consideration should be given to control as much as we can the number
of embryos to start with. Indeed, we hear a lot about progress made by proper
implantation, and doing it with the right media, I mean, growth media.
Nevertheless, we don't see any significant reductions the last two years, even
the number of reduction to do or the number of multi-fetal. Very often they
used drugs that cannot really give you such a good control, instead of IVF,
because there may be economic consideration, insurance considerations. Not
every insurance covers IVF, but they may cover some infertility therapy. All in
all, serious consideration should be given to appropriate selection and
coverage through IVF, so we won't even have to face the dilemma of high order
multi-fetal, or sometimes maybe any multi-fetal, and achieve better outcome for
fewer babies.
What do you see out there when you look at the infertility medicine across
the board? Are you seeing a big growth?
... there is a growth. First of all, in what they tackle. There are programs
that will limit the age and will say, "Beyond 45 or beyond 49, we are not going
to treat." That's because of complications and because we have more and more
professionals dealing with it. The age limit is growing. So while in the past,
nature decided that in your middle age, 40s, you are not likely to get
pregnant, we are exceeding it and extending the fertility for women. Instead of
from [age] 15 or menarche all the way to mid-40s, now we are talking about 50s
and mid-50s. It's not unusual to have early 50s or mid-50s women come in
pregnant, with or without multi-fetal. Not at all unusual. It was an extremely
unusual event 15 years ago.
How do you regard that?
We are treading on very treacherous ground here. There is more that we don't
know than what we know. I think that medically, even if we solved the issues,
we need to deal with the post-neonatal issues of these premature babies. We
need to deal with issues ... [of] more advanced age parents, issues relating to
geriatrics associated with raising the teenage children. It's just a whole host
of problems that affects society from before they get pregnant until the
post-menopausal period. And we, the doctors, should be leading the discussion
in many ways.
Quite a number of clinics advertise ... They have marketing directors. Do
you think that this could be characterized as an industry?
Very much so. I feel that infertility and treatment of infertility, while in
the past was more focused on doing work up of couples and trying to go step by
step analyzing reasons for infertility and then answering static reasons, now
is much closer to really getting to the bottom line. Let's not spend so much
energy on trying to find out why, here is the answer, here is idea, here is
pretty much guaranteed, that you'll walk out of here with a child one way or
another. You don't have a uterus, we'll find a mother to carry for you. You
don't have your ova, you don't have your eggs, we'll get somebody to donate the
eggs. [If] sperm is a problem, we'll go to the sperm bank.
In short, this becomes like a store and we just take off the shelf what we need
and we'll get you out of here pregnant, one way or another. That's where the
guaranteed results come from. It really borders on becoming an industry, not of
course, relating to the issues of infertility in universities and big
hospitals, which are really trying to be extremely ethical about it, have their
limit and try to do the right thing. I speak about those who fly people from
other countries here, and really make an industry out of it.
If you're advertising, "We will get you pregnant; you will go home with a
baby," is there any reason for them to be advertising or talking about the
downside of that?
Of course there is a reason. There is a reason to talk about the downside,
because that's what any ethical doctor would do, is get the patient as much
information as possible. I know that from meeting with these couples, many
times they call me Dr. Doom at the beginning, because all of a sudden they are
faced with the first sign [of] bad news, which are the truth and reality. When
you are out there and trying to promote an industry, there is a natural
tendency to maybe underplay, under describe the downside.
Number two, the infertility doctors don't really deal with either the selective
reduction and/or the prematurity later on. Their job is to get the patient
pregnant. They are responsible for that particular part. So, again, this is not
everybody in infertility ... Most of the people in that branch of medicine are
very ethical and try to do a good job as much as they can, but they have a lot
of factors working against them. One is economic reality. Many times it's their
marketing directors advising not to stretch it too much. I think any brochures
that you take from any infertility clinic would not have a great part devoted
in the brochure [on] what happens beyond. They have pictures of wonderful
couples with rosy-cheek babies on their lap, usually twins or triplets, but
nobody mentions that they were born pre-term. Nobody mentions that they spent
[time] in the nursery for weeks and weeks. Of course, if they have CP [cerebral
palsy], they are not going to be appearing on the brochure.
When do infertility doctors talk about going to blastocysts? They say that
they probably wouldn't be implanting more than two embryos. Do you think that
reducing these multiples to twins will solve the problem of prematurity
largely, or not?
The issue of reduction needs a very serious discussion before they implant the
embryos. We, today, discuss selective reduction in a way that the patients hear
about it only after they already have the embryos in and they are developing
and they see the appropriate number of heartbeats.
Now, when one tells us that they want to reduce from quintuplets to twins, we
can understand that. When somebody wants to reduce from twins to singleton, we
don't know how big an advantage it is, but of course, everybody is right, it is
legal in this country to do that.
When it comes to reduction from triplets to twins, it is more of a gray zone.
How much do you gain versus the risk of the procedure itself. There are some
studies that show that the outcome will be better if you reduce from triplets
to twins and there are those studies and the control is very difficult because
you cannot randomize the parents. Each parent comes with a special baggage,
decides about it separately. But our studies have shown that the difference is
very minimal or amounts to the same about that you risk by not reducing at all.
We have problems counseling couples and, you know, couples are very well
informed. They go on the Internet, they look at these things and I am sure they
are conflicted, too, very often about that issue.
Apart from the selective reduction issue, if in five years we have many
twins ... because blasotcysts really did take off, is that still a problem for
an obstetrician/gynecologist or a perinatologist. Are a lot of twins a
problem?
Having twins, in terms of present management versus singletons, raises you to a
completely new level of risk. Twins are associated with 50% +/- 10% risk of
prematurity, preterm labor, preterm delivery and other complications such as
toxemia, a complication such as discordant growth and so forth. So there is no
question that having just twins, even that, raises the concerns and anxieties
to a much higher level. I am very concerned with having a lot of twins also.
Can you tell me about the cost of multiple pregnancies, in particular, the
cost of twins.
The cost of twins in the nursery depends, of course, how long they stay there
and how intense this thing is. If we take an average gestational age at the
birth of 29 to 30 weeks, you probably will need both of them to stay in the
nursery a couple of months. If you are talking about six to eight weeks at a
cost of $2,000 to $3,000 a day, excluding special procedures and complications,
you just calculate the number of days.
If we are talking about 40 days and each of these days is $2,000 to $3,000,
each of them will be between a $100,000 and $150,000. Together, $300,000. We
are talking about extreme amounts of money for a baby for each day ... There is
ample literature, from San Francisco as a matter of fact, from the mid '80s
looking at the average cost of these premature babies and all you need to do is
multiply it when you have two or three and you get to millions of dollars very,
very quickly. So the cost is tremendous.
We talked to Pacific Fertility about the Whitcombs, without mentioning their
names. They didn't want to specifically talk about that couple, but they said,
in a general way, that blasotcysts will be the answer to multiple pregnancies
... What do you feel about that?
I hear that blasotcysts will be the answer. We had the blasotcysts available
for a little while. I am looking forward to getting a lower order multifetals.
That would be step number one. Nevertheless, you have to remember that not all
multifetals are the results of IVF. Even twins are quite a significant risk,
but any reduction is a welcome reduction. I am very much in favor of reducing
the number you need to implant in the first place. We will wait and see. I am
very hopeful that it will help. We'll have to see.
Blastocysts has been in for a couple of years. Are you seeing any reduction
at this point?
Up until now, we, at our center, have not seen a reduction, no. This could be
because of two reasons. One is if you have singleton gestations after IVF, you
may not send them to our center. They just may be in the peripheral hospital.
And if there are many of them that don't come to us, that is a good sign, but I
wouldn't know about it.
I did not see, at this point, any reduction in the number of multifetals in our
population so either we are getting more referred, just from other places, or
there are just more couples. In spite of the improvement with blasotcysts
implantation, we still have a high number.
This whole area of medicine seems to be so unique ... Do you see it as a
really unusual area of medicine, operating in a way different than most areas
of medicine?
Definitely, I see this as a unique thing because in our area of medicine, a
decision before birth may affect what will happen 50 years from now. When you
go to have your coronaries replaced or balloon aplastic to dilate them, we are
talking about five years, 10 year prolongation. Maybe a little decision to
operate on a certain cancer that will change the outcome by a couple of years.
We are talking about decisions made now about a third person that can have no
say here, that will affect the outcome of the whole family, a whole society,
millions of dollars for 70 years to come. So this is just a completely
different area than anybody can imagine, because none of us can even imagine
what will happen 70 years from now, let alone 20 years from now, but we are
making decisions about things that will affect life then.
What about in terms of the decisions that doctors make in the area of
fertility ... One of the things with medicine is they try to do as little as
necessary to help somebody. You only do what is necessary to get them well
again. Does that incentive ...
Whether we are trained in medical school or whether we are trained in
residency, fellowships, in sub-subspecialties and so forth, is to treat
disease. Everybody is focusing on treating the disease or treating a problem.
We get rewarded for treating the problem and solving the problem. Thoracic and
cardiac surgeons are considered the highest level of achievement in medicine.
On the other hand, if you have just somebody who may be a nutritionist, a
general practitioner, even an obstetrician who was successful in preventing
prematurity and delivering at term--what will I do? Will I go to the newspaper
with a term baby? There just is no pizzazz in prevention.
The same goes for infertility. There is no pizzazz in preventing infertility.
What are we going to say? This year 22,000 couples got pregnant the usual way.
I mean, that just has no charm and nothing special to it. On the other hand, if
somebody comes out and they have octuplets and they are the result of [IVF],
you can be sure that half the national media will camp out there, visit with
them again and again. They will have an agent or interviews, and they'll have
all the attention. All the attention, resources, money is given when you are
sick and when you resolve a sickness. There is no reward or very little reward,
very little teaching in our medical schools as to how to prevent, and that is
pervasive in infertility, too.
Is that the media's problem or the doctor's problem?
No, that is clearly the society and medicine's problem. Our medicine emphasizes
very, very little prevention. So it is society and medicine. It is not a media
problem at all. The media is just an example of what draws attention.
Is it a financial issue?
Definitely, there are financial incentives right now. You are, let's say, an
infertility doctor who provides IVF services, there is a very low threshold for
these doctors with the slightest problem to move on to the sophisticated IVF
and infertility. I don't think they will be very popular with the patients if
they told them, why don't you go home and try another three or four months
before we go to more complicated procedures, they are not going to be very
popular. They are not going to make the money they need to in order to survive.
So there is an economic disincentive to delve into other areas of
infertility.
For patients is this an area, there are very few controlled studies done on
the safety or efficacy of the different procedures. What is the result of that
for the patients?
Here, again, it is not uncommon in any medical field to give treatments that
are not 100% proven, and to go through with them and hope that the results are
good, regardless whether it is scientifically proven to be effective. That is
an accepted method. But there is a catch here. Patients need to be informed. If
you take the aspirin, if you take the heparin, there are certain risks
associated with heparin. It is a blood thinner, there are risks. There is a
risk of bleeding and so forth. If you take, let's say, IVIG (intravenous
immunoglobulin), that is very expensive. There are certain risks. It is being
made from biologic material. It could be carrying certain diseases and so
forth.
I am very comfortable telling people we don't have a scientific basis, we are
doing it on a trial basis, but these are the risks, these are the benefits. It
is my concern that not enough emphasis has been put on showing to the patients
that this may not be scientifically proven and I am doing it anyway. These are
the potential risks and these are the potential benefits. We emphasize the
benefits and forget the rest all too often.
You mean that in terms of many of the different treatments, not just
aspirin, heparin?
Absolutely, many different treatments. At universities, what we do is we enroll
people in certain trials and they participate and they sign a consent. In the
practical world of infertility, it is not uncommon that the doctor prescribes
the treatment and they take it. There is no real discussion as to what there
is, what the alternative, it is not 100% proven. Not even 50%.
One thing you have warned us so eloquently about is the risks that are out
there. But the response you always hear from these doctors and parents is that
they are creating somebody who wouldn't otherwise exist. That is a very
powerful argument.
Very powerful argument that, indeed, with infertility we help create a lot of
wonderful lives and that is what we are all here in medicine are for--to create
wonderful lives. I just want people to be aware that sometimes we create beings
that may not even be aware that they exist because they don't have the
neurologic capacity to do that. Sometimes we create beings that may have chosen
not to exist because their life is just not fulfilling and they suffer as they
go through life. Sometimes we create beings that prevent other beings from
being happier, even being born.
The question is not whether those who are born through infertility deserve to
be born and live life. That is not the question at all. The question is where
do we want to put the emphasis into society. Do we want to take the resources,
limited that we have, put it into infertility treatment with a multifetal
gestation or do we want to put into, let's say, prenatal care and create life
more likely to be fulfilling like that way. It is not at all a question that we
want to create life. The question is--what is the best way for society and
medicine to go about it?
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