playing god?

Evan Shulman: There's no
guarantees ever with life or

with having a child. There's a
lot of assumptions that, you

know, you're going to have a kid
and they're going to be healthy,

but there's a lot that needs to
go right for that to happen. And

it doesn't always work out like
that.

Lauren Arora Hutchinson: In the
last episode of playing god?, we

heard Kristelle and Evan
Shulman's story, how they

tragically lost their son, Noah,
to a fatal genetic disorder

called mitochondrial disease.

Kristelle Shulman: I need you to
rest now. I don't want you to

suffer anymore. No one should
ever go through this.

Lauren Arora Hutchinson:
Mitochondria are

energy-producing structures
inside our cells that carry

their own DNA, which is passed
down only through the maternal

line. That means Noah inherited
the disease from Kristelle. So,

when the Shulmans learned about
Noah's diagnosis, they also

learned that Kristelle carries
the same genetic mutation in

some of her own mitochondria.
Noah's mutation load was a

hundred percent, meaning all of
his mitochondrial DNA carried

the mutation. Kristelle's, they
discovered, is around 70%.

Doctors warned them that if they
tried to have another

biologically related child, the
risk of the disease being passed

on would simply be too high.

Evan Shulman: You guys cannot
have healthy biologic children.

Lauren Arora Hutchinson: But
after Noah's death, instead of

stepping back as might be
expected, they found themselves

moving forward. They wanted
something different, not just

for their family, but for others
facing the same risk and

uncertainty.

Kristelle Shulman: After he
passed, I think we vowed that we

need to help others, you know?

Evan Shulman: Something good has
to come out of this, like Noah,

Noah has to have, like, his mark
on the world, beyond, you know,

making all these friends in the
ICU, and he has to have a mark

on the world.

Lauren Arora Hutchinson: That
search led them towards a new

and controversial reproductive
technology, one that could

maybe, just maybe, help them
have a healthy biologically

related child, but along the way
they would encounter unexpected

complications, shifting
possibilities, and ultimately a

different path to growing their
family than one they had

imagined.

Kristelle Shulman: I'm getting
goosebumps talking about it.

Lauren Arora Hutchinson: This is
part two of the Shulman’s story,

a story about how far one family
would go to have a healthy,

biologically related child.
About how much risk and

uncertainty they were willing to
accept and what ethical

boundaries they were willing to
test.
I'm Lauren Arora

Hutchinson, Director of the
iDeas Lab at the Johns Hopkins

Berman Institute of Bioethics,
and this is playing god? Around

the same time that Kristelle and
Evan lost Noah, federal

legislators in the US were
taking a position on what's

called mitochondrial replacement
technology, or MRT. This novel

reproductive technology takes
the nucleus from the egg of a

woman with mitochondrial disease
and transfers it into a donor

egg with healthy mitochondria,
whose own nucleus has been

removed. That reconstructed egg
is then fertilized through IVF.

To the Shulmans, this sounded
like the answer they were

looking for.

Evan Shulman: We're like we have
to figure out a way to do MRT.

Lauren Arora Hutchinson: The
nucleus of a cell contains the

vast majority of the DNA we
inherit from our parents, the

genetic code that shapes who we
are. So while the resulting

embryo would be the biological
child of the mother and father,

it would also carry some genetic
material from the third person,

the egg donor, for its
mitochondrial DNA. That's the

whole point. The problem is that
this genetic change could be

passed down to future
generations. In 2016, Congress

effectively blocked the US Food
and Drug Administration from

even considering whether to
license the use of the

technology because of those
concerns. Still, some

experimental research on MRT
continued. About a year later,

hoping the results might soon
change, Kristelle and Evan took

a leap of faith.

Evan Shulman: We enrolled in an
MRT trial in the US that did not

have approval to implant
embryos, but they had approval

to create embryos. So, she
underwent an IVF cycle,

harvested eggs with the
intention of creating an embryo.

They were looking for what's
called a haplotype match, which

essentially was somebody from a
similar genetic background, so

potentially from similar
ancestral roots.

Lauren Arora Hutchinson: You can
think of a haplotype as a kind

of genetic zip code, a pattern
in mitochondrial DNA that traces

maternal ancestry. Kristelle is
originally from the Philippines,

so the hope of the researchers
was that an egg donor with a

similar background might help
give an embryo a better chance

of success.

Evan Shulman: We were just
waiting for quite some time.

Lauren Arora Hutchinson: And
while they waited, the Shulmans

kept learning about MRT and
about its risks.

Evan Shulman: You know, I went
to talks from researchers who

have done a lot of research on
MRT. I read every paper that

would come out on it, and
reading all these opinions, and

we started to hear more about
concerns about the long-term

outcomes of MRT.

Lauren Arora Hutchinson: Chief
among them is that when you

extract the nucleus from the
mother's egg cell to put into

the healthy donor egg...

Jeffrey Kahn: It's impossible to
take all of the nucleus and not

carry some of the cytoplasm, and
the cytoplasm is where the

disease-causing mitochondria
are, and so you're bringing over

some disease-causing
mitochondria when you, you do

that movement.

Lauren Arora Hutchinson: Our
resident bioethicist and

director of the Johns Hopkins
Berman Institute of Bioethics,

Jeffrey Kahn.

Jeffrey Kahn: Now, of course,
you're, you're vastly reducing

the number, but because of the
way mitochondrial biology works,

those disease-causing
mitochondria will multiply up in

the new environment, and the
question is, how much is enough

to pose, I guess, real risk of
mitochondrial DNA disease, even

after MRT?

Lauren Arora Hutchinson: In the
end, Kristelle and Evan were

unable to find a donor egg that
was a close enough haplotype

match, so they didn't move
forward in the MRT research

study, but these questions about
risk and uncertainty were

quickly reignited as they pushed
forward to explore other

options.

Kristelle Shulman: We did
consult with other mitochondrial

disease specialists, and then,
of course, finally we met with

Dr. Falk.

Marni Falk: I met Kristelle and
Evan when they were trying to

figure out whether they could
have a healthy baby.

Lauren Arora Hutchinson: Dr.
Marni Falk, director of the

Mitochondrial Medicine Frontier
Program at the Children's

Hospital of Philadelphia.

Marni Falk: And, it was a very
difficult conversation, but it

was clear that they were very
motivated and wanted to do

everything they could to have a
biologically related child, and

that's, that's how we got to
know each other.

Lauren Arora Hutchinson: Central
to their conversation was a

puzzling question: why
Kristelle, who carries the

genetic mutation in more than
70% of her mitochondrial DNA,

had never shown any symptoms...

Kristelle Shulman: When Dr. Falk
said, "you know, you're so

active, you're constantly
working out." And so, she says

that this is probably what is
helping you. You know, you're

compensating.

Lauren Arora Hutchinson: And
they begin looking more closely

at her extended family.

Kristelle Shulman: You know,
like my family had no idea, like

I was the third of four
children, so and on my mom's

side, they had eight, you know,
it's like a big family, so they

had no idea.

Lauren Arora Hutchinson: Had
anyone else been affected by the

disease, like Noah?

Kristelle Shulman: So one of my
aunts, yeah. So, she had a girl,

and I think 18 months, like, she
passed. So I'm from the

Philippines, and back then in
probably like late 70s-80s,

healthcare is not the same as in
the US. They diagnosed her with

pneumonia. You know, there was
no test, diagnostic testings, in

terms of, you know, genetic
stuff, so it's... it was

unknown. So that was the only
one, I guess, young cousin that

I had who passed, but other than
that, like we had... you know,

everyone's relatively healthy.

Lauren Arora Hutchinson: Maybe,
they thought, this was a reason

for hope.

Evan Shulman: We suggested that
everybody in the family get

tested, and it turns out that
there was quite a wide range of

mutation load in them. So,
anywhere from 28 percent to

Kristelle being the highest of
70 something percent. So, then

we took a step back and we said,
well, if Kristelle's mother was

able to produce children with a
wide spread of heteroplasmy,

then maybe Kristelle has eggs
with the same wide spread.

Lauren Arora Hutchinson: The
realization changed their

options. If some of Kristelle's
eggs carried lower levels of the

mutation, maybe they could have
a healthy child, without needing

to do MRT. They reached back out
to Newcastle University, a

pioneer of new techniques to
address mitochondrial disease.

Evan Shulman: We gave them all
the results that we got here,

and they said, "Okay, we're
going to present it at our

multidisciplinary conference,
and we'll get back to you." And

then, within a week or two, they
got back to us, and they said,

"we think you'd be excellent
candidates for genetic

diagnostic testing of our own
embryos."

Lauren Arora Hutchinson: This
approach would be a cutting-edge

new version of what's called
pre-implantation genetic

testing, or PGT.

Marni Falk: PGT is a very
standard used every day all

across the United States of
America in the setting of in

vitro fertilization.

Lauren Arora Hutchinson: Dr.
Marni Falk, again.

Marni Falk: When you have an
embryo and you take a sample on

day five for most nuclear genes,
and you ask the question, is the

mutation that's known to run in
this family present in this

embryo. That's preimplantation
genetic testing, and that's

being used for any nuclear gene
disorder. What hasn't been

available until recently is
preimplantation genetic testing

for errors in the mitochondrial
DNA.

Lauren Arora Hutchinson: The
Shulmans decided to become

pioneers of this new approach.
It's an extremely delicate

process.

Marni Falk: You have to be
really precise to know that the

result you're giving doesn't
just find the mutation, but

tells you the percentage of that
mutation in that cell, and then

the other question that people
weren't certain of is, how

likely is that level that you
find on day three after an

embryo has been created relate
to trillions of cells dividing

over time by the time that
baby's born to know what the

level would be in their organs,
their brain, their heart, their

kidney, or their blood. Could it
become 30% or 50% or 80% in

certain organs of the actual
baby? Those answers still aren't

known.

Lauren Arora Hutchinson: The
uncertainty remained profound,

but the Shulmans remained
certain they wanted to push

ahead. They began planning to go
to Newcastle for tests, which

was the only place in the world
where PGT for mitochondrial DNA

was available.

Evan Shulman: It was a lot of
work. We had to spend about a

year and a half doing a lot of
legwork here. Kristelle

underwent another IVF cycle.
There was a lot of red tape, a

lot of barriers, a lot of lab
work back and forth, and at the

time they were not comfortable
receiving genetic material from

here, and just essentially just
shipping it over there. They

wanted us present with our eggs
or embryos, and they wanted to

do the embryo transfer in real
time with Kristelle there.

Kristelle Shulman: We also
found, like, I mean, on top of

those barriers I think
financially too was a big one,

so luckily, like I wasn't, you
know, a nurse practitioner at

Mount Sinai, and it was
unionized. So, the IVF, the

fertility, was covered, but it,
you know, of course, it wasn't

enough, so there was some things
that we had to, you know, we had

savings, so it's, it's a lot too
financially.

Lauren Arora Hutchinson: After
18 months of preparation,

Kristelle and Evan were finally
ready to fly to Newcastle.

Evan Shulman: The first time we
actually treated it like a

vacation, we had a whole
itinerary planned out. I mean,

we, we love to travel together.
We had embryos created here in

the US, they were frozen on day
one of development, and those

embryos were taken, hand
delivered by courrier to the UK,

and we met them there, and the
team at Newcastle, who we had

been speaking with for a year
and a half, was, of course,

great. They were so welcoming
and warm and positive.

Lauren Arora Hutchinson: The
embryos were thawed, allowed to

grow, and then tested.

Evan Shulman: And then I would
say, I think it was like the

next day, I forget where we
were. I think we were at a beach

or something. We were, we were
walking around, and we got a

call from the embryologist with
our results, and we were like

ecstatic. She told us we had one
embryo that was as low as 10%

mutation load, and on the flip
side, we had several that were

like 98-99% which essentially is
basically what Noah had, and

again it was one of those like
bittersweet moments where we're

like, wow, like hearing 10% we
know there's a chance for a

healthy child in there, and also
hearing 99 is scary, because if

we just blindly went into this
again and had children again, it

could have landed on that, and
we'd be in the exact same place

again.

Lauren Arora Hutchinson: With
high hopes, they tried

implanting the embryo with that
10% mutation load, but

unfortunately, as often happens
with IVF, it didn't lead to a

pregnancy. Once again, they were
left asking themselves, what

level of risk is low enough?

Jeffrey Kahn: What's the
threshold? That's the question

that the Shulmans and others at
the sort of early stage of these

kinds of technologies have to
wrestle with.

Lauren Arora Hutchinson: Jeffrey
Kahn, again.

Jeffrey Kahn: And so, you have
to be comfortable with this

level of risk and uncertainty,
and decide whether or not to go

forward. You know, put yourself
in a position like that... what

would you do? They weren't being
offered the option to make the

risk go away altogether, and so
they had to decide how

comfortable they would be with
some level of risk.

Lauren Arora Hutchinson: That
was a decision only the Shulmans

could make.

Evan Shulman: In Newcastle, they
said they were comfortable in

the 35 to 40% range, and they
even said, honestly, 50% is

probably okay.

Kristelle Shulman: And I think
it's also because they saw that

I had 70 to 80% and that I was
able to pretty much live a

normal life, thank God. So it
was definitely individualized.

Evan Shulman: As far as like
what level of risk to accept, we

kind of started thinking like
there's no, there's no guarantee

every pregnancy is a risk, and
if, if you had cancer that ran

in the family, would you not
have a child, or if you had

heart disease running in the
family, would you not have a

child? If you knew that there
was a reasonable chance that

they could avoid it later on?
And that was kind of the

approach that we took. We tried
to take a step back, and while

mitochondrial disease is very
serious, most often it's not,

it's not terminal with a low
threshold, you can live a

perfectly healthy life.

Kristelle Shulman: Or even a
high threshold,

Evan Shulman: or even a high
threshold. Yeah, yeah.

Kristelle Shulman: So it's,
yeah.

Lauren Arora Hutchinson: Over
the next four years, they went

through multiple rounds of IVF,
six embryo transfers, and three

trips across the Atlantic. There
were setbacks, failed

implantations, and early
pregnancy losses. It was

exhausting and heartbreaking at
times. They weren't sure they

could keep going.

Kristelle Shulman: Oh my
goodness, we just didn't think

it was possible, but we were
still hopeful. We wanted to keep

going, I wasn't going to stop,
and I think it's also Noah

pushing me to it, because I knew
once I held him, I knew once I

had him, like... it's just
something that I don't want to

miss out on.

Lauren Arora Hutchinson: But
then, in late 2020, using an

embryo with a low enough
mutation load, Kristelle finally

got pregnant.

Kristelle Shulman: I remember
looking at the pregnancy, you

know, stick, and we're like,
what, like, like, you know, we

just... it was surreal. It was
almost like, this can't be real,

this is, this is impossible, and
you know I'm getting goosebumps

talking about it.

Evan Shulman: There was jumping
involved, I think.

Kristelle Shulman: Lots of
jumping and screaming and...

Evan Shulman: Kristelle and I
both still remember our

expressions.

Kristelle Shulman: So throughout
the pregnancy, you know, of

course, we were worried.

Evan Shulman: But, she had a
completely normal pregnancy for

nine months, and then 2021, Nora
was born.

Kristelle Shulman: Delivering
Nora was not without

complications, and I said, 'Oh
my god, Nora, you came into this

world like loud, like just you
just made sure that you are

here, like, and she's still like
that. She's just Nora. I can't

describe her. Can you describe
her, right? She's... Evan said

that she's a tank, and that's
true. She is a tank.

Lauren Arora Hutchinson: Nora
was one of the first babies born

in the US to have been screened
for mitochondrial disease risk

using PGT, and most
importantly...

Kristelle Shulman: You know,
she's healthy. Thank God, she's

so healthy, and I hope she
can... I pray that she continues

to be healthy. So it was, it was
nice, it was a good feeling,

just knowing that it worked, you
know?

Lauren Arora Hutchinson: After
Nora was born, doctors measured

her mutation level again.

Evan Shulman: Her heteroplasmy
matched exactly what they

predicted when she was an
embryo. She goes once a year to

see Dr. Falk and make sure that
she stays on track with

everything, but she was always
ahead of the curve with her

growth, with speaking, with all
her milestones, and now next

year she's going to be starting
kindergarten.
She's turning

five this summer already, and
yeah, she makes us very happy.

And then last year we added to
that with our second baby girl,

Hannah, who was born November
2024, and she's now walking and

babbling and also hitting all
her milestones.

Marni Falk: When you hear the
voice you know of the laughing

child who's been born from this
and you hear the stories of the

families... we are all very much
indebted to the Shulmans,

because they really did have to
go through an awful lot. Many,

many cycles, many, many trips,
many, many conversations, a lot

of stress, a lot of hope, a lot
of failure, and they're, they're

on the side now of having two
healthy children.

Jeffrey Kahn: The people who are
first are... I think it's always

right to talk about them in
some, some sense as a pioneer,

so they're, they're breaking new
ground here. And, and it's so

novel that, that it's hard to
say well, we know from

experience that because there
isn't any experience yet. The

Shulmans were really at the
forefront of this. At some point

that technology will be shared
and developed, and it will be

more available in more parts of
the world. So, it's pioneering

on the part of the Shulmans,
it's pioneering on the part of

the laboratories, pioneering on
the part of the physicians who

are helping, but that's how
that's how medicine advances.

Lauren Arora Hutchinson: Since
the Shulmans’ early

conversations with Newcastle,
the science has continued to

evolve. The technique they used,
mitochondrial PGT, which allows

the lab to screen embryos for
mitochondrial disease before

pregnancy, is still only offered
in a few places in the world.

The approach that the Shulman’s
first considered, mitochondrial

replacement technology or MRT,
aims to prevent disease by

replacing faulty mitochondria in
the egg itself, prior to

fertilization. MRT still isn’t
permitted in the United States

and is tightly regulated in the
few places it is allowed. But in

2025, doctors in the UK reported
what many are calling a medical

breakthrough: the births of at
least eight babies using MRT. So

far, all appear to be healthy.

Archive: A groundbreaking IVF
technique involving three people

has resulted in the births of
eight babies free from what can

be devastating diseases.
Scientists in Newcastle have

pioneered the technique to stop
mothers passing down a mutation

in their DNA that can cause
mitochondrial disease, which

commonly impacts major organs,
such as the heart and the brain.

Evan Shulman: The beginning of
our mission was to help other

families and hopefully prevent
other people from going through

this, and we've had a number of
families reach out to us, and

one family reached out to us,
who we, we ultimately ended up

getting them in the hands of
Newcastle, and they had a son

who was born about a year after
Nora.
They named him Noah,

which is pretty touching for us
to hear, and they actually

brought him to our daughter's
first birthday party at our

house, and we got to meet the
family and meet their son, and

it was sort of surreal to see a
baby that was born healthy from

a technique that was, I want to
say, almost nobody in the US

knew was even available, and no
one was supporting. And now here

we are, we have two babies
sitting together who were born

from the same technique,
healthy, happy. There's these

days when we look at each other,
and we're like, how did we get

here? Like, how did we turn
things around for us, and end up

with two beautiful girls in
front of us... the family that

we always wanted.

Lauren Arora Hutchinson: Next
time on playing god?

Rebecca Morrison: I mean, I'm
just a person that is trying to

determine something for my own
health. What is the responsible

thing to do as a human being, as
a woman, as a mother, as a wife,

as a daughter, as a person.
Should I do it? Do I need to do

it? Do I have to do it?

Lauren Arora Hutchinson: Many
thanks, again, to Kristelle and

Evan Shulman for sharing their
story with us, and to Jeffrey

Kahn and Marni Falk.

playing
god? is a production of the

Dracopoulos-Bloomberg iDeas Lab
at the Johns Hopkins Berman

Institute of Bioethics, made in
association with Sea Salt and

Mango Productions.

This
episode was produced by Redzi

Bernard, with help from Brian
Ricker and Lyric Bowditch.

Our Executive Editor is Tony
Phillips.
Music and sound

design by Alexander Overington.
iDeas Lab Producer, Lyric

Bowditch.
Researcher, Brian
Ricker.
Story Editor, Simon

Adler.
Show art by Barry
Pousman and Shawn Carney.
Our

Production Coordinators are Leah
Lord and Susan Snead.
Our

Executive Producers are Jeffrey
Kahn and Anna Mastroianni.

I’m Lauren Arora Hutchinson,
host and Managing Editor.
Come

back next week for more playing
god?