Episode 5 – Pregnancy with a Bleeding Disorder – A Conversation with Megan Reid

welcome to today's episode of The Flow.

Today we're welcoming Megan Reid, who is a board member for Hemophilia

Ontario to talk about pregnancy with the bleeding disorder.

I'm really happy to have Megan with us today.

She has really great experience to share and it is a gap that a lot

of people with bleeding disorders.

Often have questions or wanna hear about, so I'm really thrilled

that you're with us today, Megan.

So welcome and I'll give you a second to

introduce yourself.

Wonderful.

Thank you so much, Natalie.

I'm really happy to be here with you.

Obviously as mentioned, my name is Megan.

I am a board member with Hemophilia Ontario and my most

important role, of course, is being the mom of two amazing boys.

One six years old and one two months, both living with severe hemophilia A.

So I'm really glad.

At least shed my perspective on what my experiences have been going

through both pregnancies and now in my motherhood journey with my boys.

Oh,

well, I'm so happy that you're here.

So why don't we sort of get it started with, can you, can you

talk about your first pregnancy?

Because h help us understand, did you know about the bleeding disorder?

If not, how did you find out?

Like, share a little bit about how that all came to be.

Absolutely.

So I did not know I was a carrier of hemophilia.

We had zero family history of hemophilia, so, Actually my pregnancy

was as normal as a pregnancy could be.

Robbie, we went all the way to 40 weeks gestation, and Robbie actually arrived on

his due date, so that's pretty uncommon.

But I know we were really excited when he arrived.

So even going through the delivery, we did have a very long delivery.

There were a couple moments that were a little bit nerve wracking, I'm

sure for many first time moms, but thinking back to it, Robbie's head got

stuck when we were in the delivery.

So we got really lucky that they didn't actually use any

tools or forceps or vacuums.

And Robbie was able to be delivered safely.

And in hindsight, it, we were just so incredibly lucky that

that didn't need to occur.

Fast forward eight months that's when Robbie got diagnosed

with severe hemophilia type A.

And really what led us to look into whether there was something to be

concerned about was just the fact that Robbie was getting a lot of bruises and

hematomas, definitely not something you would ever expect to see on an infant.

So we knew we were taking really good care of him.

Besides my in-laws, my husband and I were really the.

People that were ever really caring for our sons.

So there was no reason he should have had these bruises.

And obviously you can imagine it was quite scary.

So I remember at the time going to our pediatrician and asking her, what

do you think could have caused this?

And, her telling us at the time, she would absolutely help us do some testing

and look into it, but also to be aware that, children's aid could look into

it, that obviously she was gonna have to report it as he was an infant.

Some bruising.

So luckily for us we were able to get the blood work done fairly quickly and we were

asked to go into the hospital and we had no idea why we were, we were going in and

I know Robbie had to have some more tests done at the time, and I'll never forget

the day they called us in and they said, you might wanna bring some support with

you, so make sure you bring your husband.

Prepared to be at the hospital for several hours, so maybe bring a snack

and just come prepared to be there.

So we got called into hematology and oncology, so we were very, very nervous.

It was a day that I don't.

Really like to think about a lot, to be honest.

But after meeting with the doctor and he explaining to us that Robbie actually

had hemophilia, so I had very little knowledge about what hemophilia even was.

Obviously I knew it was a bleeding disorder, but to go into specifics

wasn't something that neither myself or my husband had any experience with.

So the doctor explained, he did have severe hemophilia men.

His factor levels were 0%.

And he.

Wanted that to sink in for us.

And then basically said, we, we can discuss further about what

the next options are gonna be.

But I distinctly remember them handing us a very thick binder and it was filled

with everything you could wanna know about hemophilia and basically saying,

go home, read this information, and we'll set up the next appointment and go

through what the next steps were gonna be.

So, I just remember thinking, do I have to quit my job?

is this something that I'm gonna have to be at home with him all the time?

What does this mean?

So it was just a ton of questions that we had and really we had to

start from square one and just even learning about the diagnosis.

Very stressful.

Definitely.

Especially having no previous knowledge.

I mean, when you say hemophilia, most people have an idea that it

has something to do with blood.

Mm-hmm.

But beyond that, The general person doesn't really know much more so to

hear that for the first time and, and I'm just thinking about how scary it

must have been to hear, okay, expect to be at the hospital for several

hours, brings support and you're going to the oncology and hematology unit.

Mm-hmm.

Like that just Oh, thanks for sharing that part, Megan, cuz I'm sure that

you don't like to go back and review.

Time period a whole lot because that would've been very scary.

So how did you find the process?

Then?

You go home, you've got this big binder.

What was it like then somewhat acclimating yourself to all of this information?

Because it's a lot to take in.

It's

so much information, and of course I did what probably

most people start doing.

Not only did I read through the binder, but then you start Googling

and, you just, you sort of go down this rabbit rabbit hole of information

and try to take everything in.

I also wanted to try to have informed questions.

I knew we were gonna be going back to meet with the doctor, and I wanted to

know what should, what should I be asking?

What should I be doing, and just sort of figuring out what my new role.

The mom of a, a hemophilia was going to look like how that was going to be

different than what it had been so far.

So, I think for us it was just trying to compartmentalize the information

and then say, what do we need to know?

what is coming up right in front of us?

What, what are the next few months going to look like versus what are the

next few years going to look like with the sun growing up with hemophilia?

Right,

right.

And did they decide to test either you or your.

So, you know, they asked us a ton of questions at the time.

And of course, one of the funniest questions, I always bring this up cuz

I get a good chuckle out of it, was whether or not my husband and I were

related, of course we're not related.

But they did do genetic testing both on.

My son Robbie and myself.

So that took, I would say a couple months actually to get that back,

to really have the information.

But we did find out that the genetic mutation was with myself,

so I, grew up my entire life.

Not knowing that I carried the hemophilia gene and not really having

any symptoms of hemophilia that I would've thought about at the time.

Of course, looking back in hindsight, things are different, but yes, not

knowing not knowing at the time.

So, That was pretty interesting to find that out.

We did go one step further and actually my mom had some testing done as well.

And, that's where it ended was with me.

So it was just interesting to find that, to find that out.

Yeah, it is interesting and I think we could even do

a whole separate talk mm-hmm.

On not knowing your whole life.

So realistically, just everything for you being normal.

Mm-hmm.

But I, I would love to have a whole separate conversation

about what it was like once, once you start looking back mm-hmm.

And seeing, you know, things that you go, huh, okay.

So maybe that wasn't normal, but that's, that's a, that's a talk for another day.

Yes.

So, Now moving into realistically talking, I, I thought it was good to get

a background about how you came to know, because for your second pregnancy, you at

least were armed with some information.

Mm-hmm.

So what did you do differently?

How did you d what, how did you take on this second pregnancy?

So they were two totally different experiences.

I have to say that absolutely, totally different in every, every way possible.

So we do have a six year age gap between the two boys and part of

that was by design, of course.

We wanted to get really comfortable with, being able to be great caretakers for

a son with hemophilia and just getting to know what that routine looks like.

Which we, I think we did a great job and we definitely knew we wanted to.

At least one more child.

So we decided it was going to be going to be the time that we were gonna do that.

So I did have my factor levels tested and each time I had my te my factor levels

tested, they tested above normal range.

So, I felt pretty confident that in terms of myself, because you

have to make two considerations.

What are the health risks for yourself?

Going through a labor and delivery being a carrier, hemophilia, and

then what are the possible concerns or complications for your child?

So we knew that.

You know, Robbie, in our eyes is, is perfect.

We felt very confident as, parents of the hemophilia, that if our, our

second child did have hemophilia, that we would be fully prepared to

handle that in all of the best ways.

So once we knew my factor levels were good.

We decided that we would have an amniocentesis when the timing was right.

So, the first steps, of course, are finding out that I was carrying a boy.

So going through that ultrasound and, a lot of times I think

parents get to pick and choose.

Are you gonna find out?

For us it was a definite need to determine the sex of the child as

soon as we possibly could to just understand what that was gonna look like.

So second baby turned out he was a boy.

So we were excited that he was going to be a boy.

I absolutely love being a boy mom.

And then I had a referral.

So immediately I went from my OB to being referred into a special

pregnancy program at another hospital.

So things definitely in terms of just my pregnancy care.

I felt were totally different.

So I was at appointments every two weeks.

I was having ultrasounds every two weeks.

So I got to see this baby really develop all the way through the pregnancy.

I feel like I got to know him a little bit better than I did with, with my first son.

So, you know, we.

You have to make the decision about what's right.

Do you have an amniocentesis?

Do you wait to have the cord blood tested during the delivery?

Initially I thought we would wait and then, through discussion with my medical

team and my husband, we just decided for us the best choice was to have the amnio.

So we waited until I was 35 weeks pregnant because at that point, the baby.

Basically full term, he was good.

He's healthy there, there's little to no risk with having the procedure done

and waiting to get those results back.

I can tell you that was like edge of your seat.

And, they tell you it'll take a couple weeks, but you're just

on, waiting with baited breath.

So yeah, a couple weeks when you're

waiting for something, feels like it could be years.

That's

a long time.

It was it was very different.

And I mean, even meeting with the different teams.

So in this case, I had the opportunity to meet with genetics.

I had the opportunity to meet with hematology.

I was meeting with my ob, I was meeting with, the anesthesiologist

that was going to give me the epidural.

So I just felt really super confident that all of the right

things were being done to make sure that this delivery was going to be.

Great.

So when we finally did get the results back, I remember sitting in with

hematology and genetics and for some reason I did not think this baby

was gonna come back with hemophilia.

I don't know, I just had a feeling.

And of course they told me, your baby is affected with hemophilia.

And I don't know, I must have been emotional that day, but it

was like, Kind of broke down.

So as much as I had prepared for it, I just had a, a lot of emotion

coming out at that time, and then you think, did I make the right decision?

But I think we, we felt strongly that we did, and I'm glad that I had

the results done because I feel like you get so much more information.

So we knew that the baby was perfectly healthy in every other way.

And we were going to be well prepared to.

To have the delivery with hemophilia.

So the second discussion of course is do you have a cesarean or

do you have a vaginal delivery?

And my first delivery was vaginal and I really wanted to try to have that

type of birth again with my second son.

For me, I felt like there was more re risk having a cesarean section.

I know that's a discussion, a hot topic that comes up a lot,

but I felt really good about the information my doctor was giving me.

We had a lot of discussion around what the best choice was gonna be.

You know, my son William, he's my second boy, he was quite big, so

we were getting to see him through all of these ultrasounds and seeing

how large he, he was growing and.

You know, we were just looking to see, okay, how is this delivery gonna be?

He's a big baby.

So we did decide to, to be induced.

So the doctor had me induced when we thought it was the right time.

So I think that was the right choice for us to do that.

And, I felt, I felt good about it, but it., there's more nerves going into it the

second time because you know, definitely there's just more you're thinking about.

And I would say just preparing with my husband than I, I did the first time.

I really,

I really appreciate how you sort of repeatedly say we made this decision

based on our healthcare team and our, our particular family situation because

I think it's important for anybody listening that this is your experience.

But for anyone who is pregnant or planning a pregnancy or even contemplating,

this is where your team comes in and your own situation because every single

decision that's made will be dependent on those specific factors to you.

And always the health team is the place to go to, to ask those questions

and help make those decisions.

So I really appreciate because I keep hearing you go, you know, we decided

for us and and I appreciate that and I.

Like how you highlighted, there are some hot button topics when it comes to

pregnancy and delivery and new babies.

There's controversy on everything, whether it's to have the amniocentesis,

whether it's to have what type of delivery, and there's always people

on either side of that discussion.

And you are not a medical expert.

I am not a medical expert.

You know, it's that reminder that it always comes back to making a

decision that is right for you, that's individual and specific to you and in

conversation with your medical team.

So thanks for that acknowledgement, cuz I think that's really important.

Another thing that I was thinking, Megan, when you were talking

is that I, I love how you.

That you were so prepared and you both made this decision, knowing

that the possibility could be there, you felt very prepared to

be parents of another hemophilia.

No problem.

This was a decision.

You felt very confident, but that you still felt emotional when those results

came in, that emotion is real and raw.

So I really thank you for sharing that because I think that it's, it's, you can

be prepared, you can want all of things, but like anything else, we experience

those moments of real emotional.

Feeling and, and I, I think I Thank you for sharing that cuz that's,

it's just part of the realness that can be surrounding that.

So how did, how did everything kind of, what happened then with

delivery and after delivery and how did all that I'm hearing you sounded

supported by your medical team?

Mm-hmm.

I definitely did.

It was something too that I also felt really good about.

I, I work a full-time job.

I also felt really supported by my employer because obviously

I was, having to go to these appointments every two weeks.

So I needed a little bit of flexibility to do that.

But I felt that I had the right amount of time with each of the medical experts.

So it wasn't one doctor you were getting a lot of different advice.

Experience and just sort of counseling from the whole team.

And then it was great for Rob and I my husband to discuss, you

know, what are the best options?

How are we feeling?

So, I mean, really the pregnancy itself was quite normal.

There was nothing, you know, nothing out of the ordinary about it except knowing

what was gonna happen at delivery.

So, being induced, I just remember having a lot of anxiety and it,

it was so, my husband, I think, felt more calm this time around.

He felt more prepared and I felt like I had more anxiety.

So the two of us together, it was, it was pretty funny, but, well, it was a

balancing, you know it was 17 hours.

So I remember we got induced and, thinking this is gonna go quickly.

And usually that's what they say.

The second one comes a little bit faster, and although it was shorter than my first

delivery, it still felt like a long time.

And so the delivery.

Self actually went really, really well.

I sort of, I had prepared myself for it and, you know, you sort of go

through these exercises a few months before because I knew that I wanted

to be able to have this delivery without using any type of tools,

forceps, vacuums, that sort of thing.

And so we did that and, we had a beautiful baby boy William, and he was

eight pounds and nine ounces, so not quite as big as we thought he was, but,

still a pretty good, that's a big guy.

And you know, it was so, it was just sort of surreal and beautiful at the same time.

So right after delivery, hematology was in the hospital room with us.

They looked over, everything was great.

He was doing great.

His heart rate was great.

It wasn't until a couple hours later when we were taken out of the

operating room and brought down to.

Brought down to her room and we took his little cap off and you know,

we were just sort of checking him over and he had an entire bruise

all over the top of his hole.

So, you know, then you're just panicking because you're

like, oh my gosh, here we go.

And again, The team was really great.

So they took him in and they did an ultrasound to see where the blood was.

And they did, did a lot of tests, but we were also prepared.

So he went into the NICU and they did treat him with factor.

I mean, that's generally the rule factor first.

So he had his first dose of factor after he was just a couple of hours old.

Wow.

And it turned out it was.

Blood, you know, surface level blood on top of his skull.

So really more cosmetic than anything, which thank goodness for that and he was

perfectly healthy, but again, we felt like it was the right decision to just treat

him with that factor and make sure he was.

He was doing really, really well.

So by the next day we were actually able to bring him back down and take him out

of the nicu and he was doing so well and I just remember seeing him in there

because he is such a big baby and a lot of times you see these little tiny babies

and the incubators and there's William, you know, big, healthy baby, just.

Getting his factor.

But I do remember the nurses looking at how to mix the factor and you do

feel like a bit of an expert because you're showing them, no, no, I got this.

Let me show you how to mix, how to mix the factor to be

able to give him his treatment.

So yeah, definitely felt more prepared with that.

So along those lines because again, yes, you would've felt way

more prepared in you, you know how to mix factor, you know what to do.

And I think, I think lots of people who live with a bleeding

disorder often feel like they are.

A little bit more expert in environments that they go into.

So do you have any thoughts or any ideas?

And again, not advice cuz we're not handing out advice certainly, but any

thoughts or anything that you would suggest if planning a pregnancy or.

Currently pregnant or anything that just comes to mind that, when you

experience something, you're like, oh, I would've maybe thought to ask

this or ask that or check into this.

Mm-hmm.

I definitely think you wanna make sure that you feel really confident

with the team that you have and just.

Be sort of involved, like when you're going through the ultrasound, like

you get really comfortable with things like being able to look at the blood

flow and definitely you're not an expert, but it just, it just makes

you feel I think a little bit better.

But I would say the pregnancy in itself, there's not really a lot

to be overly concerned about.

I think it's just.

A lot of preparation and planning for that delivery and sort of what

are the next steps gonna look like?

And really just feeling confident that you are asking the right questions.

You know, what would happen if he does have a bleed?

What would happen, you know if, if this bleeding doesn't stop.

Like just to be able to have, have that plan.

Mm-hmm.

But I think it's probably more what's the word I'm looking for?

You probably worry more about it than you need to, you know?

Like a lot of times, like those babies are so resilient, you know, like

they really, really are, I think, more than we think that they are.

And I think it gets really interesting with hemophilia when they start to get

a little bit older, with Robbie at.

Eight months he was diagnosed, but at 14 months he had his port put in and

then started receiving prophylaxis, with William, while we've had definitely

our meetings and our, our discussions with the team about what his treatment

plan will look like, it's really just.

Like having a baby that doesn't have hemophilia., we know he does,

obviously we're a little bit careful.

We do his, head to toe checks every single day when he has his bath.

But he's not gonna start receiving treatment till a little bit later on.

So I think just really.

Don't overthink it and just try to enjoy the experience.

Like don't make the pregnancy about the hemophilia, make it about the baby,

and then just what are, the things, the considerations you're gonna take

right, to take care of your child,

really good advice because it goes by really fast.

And I really love that your, your piece of that was try to really enjoy it.

There's things you have to consider certainly, but try to enjoy it.

I love that.

Another question that just came up for me is you were talking about how

when you were making the decision to have a second pregnancy, that you did

need to consider health risks for.

As well as health, health risks for delivery and baby.

So now was there anything specific that you had to, like, I know you

were getting your factor levels checked and was there anything else

that was sort of suggested to you around, any risks for, for pregnancy?

To be honest there, there wasn't a lot.

Like I was referred to the special pregnancy program and you know, I remember

having the conversations even with the doctors at the time that your, my

pregnancy was I was perfectly healthy.

The pregnancy was going very smoothly.

There was no other outside risks.

It was just really thinking about making sure that both myself and

the baby were gonna be safe and healthy during that delivery period.

I definitely felt good about speaking with genetics, and I think for someone, if

you, this is your first child and you're a carrier, I think those conversations

are hugely important because it just helps you understand, what could

happen, where it's coming from, and it just makes you feel a lot better.

I think I was in a.

Position because obviously a lot of the things they were explaining

to me I already had experience with because of my first child.

Right?

So I think it's just, spend that extra time and most likely are gonna find that

they take a lot of care of you as a mom.

Too, like I was sort of surprised about that, because you think a lot of the

care is gonna go after the child and it always does as it should, but it

was just, I felt really, really good about the care that I was receiving.

There was a lot of check-ins for myself, or even just my mental

health, my mental wellbeing.

How are you feeling about this?

Even after the, baby was born the doctors were still checking in

with me, calling my cell phone and.

I had such a great experience with that.

You know, even the day in the office when I found out, they were really the

ones that were consoling me and yeah.

Calling to check on me after, and I just felt really good about that.

So I think just lean into the support that can be offered to

you through those, those teams.

I like that.

I like that leaning into the support that can be offered.

And I think, I think also with there being different types of bleeding disorders that

you can be experiencing, you know, really having those conversations, really finding

out from your health team what's the best.

Sort of plan for you during pregnancy and delivery and,

and leaning into the support.

I really, really like that.

Is there anything else that you wanted to say before we wrap it up?

Megan, anything else that, I mean, I'm so glad you've shared some of

this story about Robbie and William.

It's such a great story.

I don't, I haven't heard the whole story, so this was really.

Fun for me just to walk through that journey with you.

So I'll just leave it in case there's anything else you wanna

offer and then we can wrap it up.

I would just say spend a lot of time doing that

self-care after the baby comes.

Because one of the things that, I was dealing with obviously after,

was I think prolonged bleeding.

And just understanding, you know, any risk factors that could come after the

delivery up to six to eight weeks after.

So I felt really good about having, knowing what questions to ask this time

around that I didn't the first time.

So I think just making sure you have a really great care plan in place for

not just the baby but yourself after the baby comes, because it's just

really important that you're taking care of yourself and looking for those.

Those potential risks that could happen after the delivery

as well, but, oh, great.

My point, yeah.

I couldn't be happier.

I couldn't be happier with both of my boys.

I feel you know, really excited about the future of medicine and what's happening

with hemophilia, the care that they get.

So I think for us it was definitely We wouldn't have made any other decision.

And I think, you know, my, my parents used to always say to me when Robbie

first got diagnosed that, you know, I think certain people end up being, the

parents of these wonderful children because they're really able to do the

best job in raising them and, and sort of going through this journey with them.

And I feel, I feel like that's probably the case, so I'm very

happy and glad to be there.

Aw.

Well,

I love this story.

Thank you so much for sharing that today.

I really, really enjoyed this and I mean, I can say, you know, you and

Rob and everybody, you've jumped into Hemophilia Ontario, like you've

just jumped in and embraced all that you can to know and gotten involved,

and I would say that to anybody too.

Find, find ways to get involved and reach out and make these

connections because this is really.

It becomes part of helping you feel a part of something that makes it

feel more connected and just more knowledge and more ways of sharing.

So thank you so much for today, Megan.

I really appreciate

it.