MyMaine Birth

87. Capri's Journey through a Challenging Pregnancy: Bellamy's Triumphant Story

• Angela Laferriere • Season 2 • Episode 87

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What would you do if faced with the terrifying possibility of your unborn child having severe brain and heart conditions? Capri's harrowing yet inspiring journey through her pregnancy with her son, Bellamy, offers a profound lesson in the power of intuition and the importance of seeking second opinions.

Despite being advised to consider a medical abortion by a genetic counselor, Capri chose to trust her instincts.

Tune in to hear how Bellamy defied the odds, being born without the initially diagnosed brain condition and overcoming significant medical challenges, including open-heart surgery at just three months old.

This episode chronicles the arrival of Bellamy, the emotional rollercoaster of NICU life, and the strength and resilience required to navigate parenting a child with serious health conditions. Capri share's invaluable advice on advocating for your child's healthcare and the importance of cherishing every family moment.

Their story also highlights the critical support provided by the Ronald McDonald House during their journey. Join us for an episode filled with heartfelt moments and empowering insights that will leave you inspired by Capri's courage and unwavering love for her son.

MyMaine Birth is a space where we share the real life stories of familes and their unique birth experiences in the beautiful state of Maine.  From our state's biggest hospitals to birth center births and home births, every birth story deserves to be heard and celebrated.  Whether you are a soon to be mom, a seasoned mother, or simply interested in the world of birth, these episodes are for you. 

Are you interested in Doula Support or Birth Photography for your upcoming birth?  Head over to my website to inqure about your due date.

https://www.mymainebirth.com

Thank you again for tuning in and I look forward to bringing you more amazing birth stories.  Don't forget to subscribe and leave a review and I'll see you back here again, next week!  

Capri:

There was even one genetic counselor that scared me and his dad a lot. There's a high possibility that your son might be born what people call a vegetable and not have any function at all, and we're even talking about sending us to a different state that would do medical abortions past 24 weeks because she did not think our son was worth having that, especially with how young we are, because we are only 21 and 25.

Angela:

Wow, Talk about the value of getting a second opinion. Huh.

Capri:

Exactly, and I just want to say that if there's any time that any parents, whether it's mom, dad if you have a feeling that the doctors are incorrect, and no matter how hard they push you to believe what they believe, if you believe something different, you know your child, you know the body that is growing inside of you, go get a second opinion, please, please, please, because my son came out with not even having the brain condition. That was the whole reason that they were wanting us to term it.

Angela:

I'm Angela and you're listening to my Main Birth, a space where we share the real-life stories of families and their unique birth experiences in the beautiful state of Maine. From our state's biggest hospitals to birth center births and home births, every birth story deserves to be heard and celebrated heard and celebrated. Whether you're a soon-to-be mom, a seasoned mother or simply interested in the world of birth, these episodes are for you. Welcome to episode 87 of the my Main Birth podcast. Today's birth story guest is Capri, and she's here to share all about her main birth story and the journey of her son Bellamy, who recently had open heart surgery at three months old. Hi, capri, welcome to my Main Birth. Hi, so, to start, will you share a little bit about you and your family?

Speaker 3:

So my name is Capri and my son, bellamy, is three months old and my fiance's name is Ben and he's 25. We've been together since high school we're actually high school sweethearts. We've been together since I was 16 and it's our first child together and I couldn't imagine having a better family together.

Angela:

Couldn't imagine having a better family together, so awesome. Well, now to get into your story.

Speaker 3:

will you share a little bit about when you found out you were pregnant and your thoughts in choosing your care. So I actually found out at three o'clock in the morning.

Capri:

I woke up right before Ben went to work and I looked at him and I told him I was pregnant and he did not believe me.

Speaker 3:

So I went downstairs and I took a test and yep, I was pregnant with Bellamy and picking our care, at least for around Lewiston.

Capri:

Auburn, st Mary's didn't have their women's clinic anymore, so unless we wanted to go out of town, which we ended up having to do, cmmc was the only OBGYN clinic around, so that's where we started out and then we did end up transferring to Portland. The appointment started out very, very normal just scheduled visits and that all changed during the growth ultrasound. They noticed some issues with his brain and wanted to send him down to Portland. So we went to Maine Fetal Medicine to get another scan and after that appointment we then became getting two to three appointments every week. Loisyn did still take me because we were doing ultrasounds so often the two to three times a week.

Capri:

Lewiston did still take me because we were doing ultrasounds so often the two to three times a week but every ultrasound was sent down to Portland's clinic at Maine Fetal Medicine for them to then go over and then they would contact me. It wouldn't be Lewiston that contacted me, it would be the Portland Clinic. They definitely worked around us very, very well, which was very appreciative, especially, you know, with being pregnant and my husband does work about 12, 13 hours a day. So it definitely helped that they were able to work around us in that sense.

Angela:

Yeah, now how are you feeling throughout your pregnancy, even just like physically, but also emotionally, as things were kind of shifting.

Capri:

So physically I felt great. It wasn't too hard of a pregnancy. Physically wise, I would say most of it came from emotional wise. Finding out that your child has a brain condition and then a heart condition was a lot, Especially when we found out about his brain. We were originally told that he had a rare malformation called Dandy-Walker malformation, which a lot of doctors in the state of Maine do not know a lot about, which that also made the care very hard with finding out information about that. And Dandy-Walker is a brain condition that affects the cerebellum and it affects the movement and your mobility and your function skills, so your speech, your ability to move and all those kinds of things. So I was told when I was 24 weeks pregnant that my son would be severely delayed in all aspects, like in being able to walk, talk, feed himself, on top of having heart conditions. Luckily, when he was born they did another MRI and he was cleared from Dandy Walker.

Angela:

So we are very, very thankful for that and all the work that the doctors put in to make sure that all that got checked out, despite being worried about his heart. Wow, so were you kind of hit with it all at the same time? You said you were first transferred down because they saw something with his brain, and then was that when they saw something also come up with his brain?

Capri:

Yes, they saw something with his brain, and then was that, when they saw something also come up with, yes, it was a very much. Your child is perfect too. There are multiple, multiple things wrong with your child and you need to see multiple specialists, genetic counselors. There was even one genetic counselor that scared me and his dad a lot. There's a high possibility that your son might be born what people call a vegetable and not have any function at all, and we're even talking about sending us to a different state that would do medical abortions past 24 weeks because she did not think our son was worth having that, especially with how young we are, because we are only 21 and 25.

Angela:

Wow, Talk about the value of getting a second opinion. Huh.

Capri:

Exactly, and I just want to say that if there's any time that any parents, whether it's mom, dad if you have a feeling that the doctors are incorrect, and no matter how hard they push you to believe what they believe, if you believe something different, you know your child, you know the body that is growing inside of you, go get a second opinion, please, please, please, because my son came out with not even having the brain condition. That was the whole reason that they were wanting us to term it.

Angela:

Yeah, wow, definitely go get that second opinion if you have any doubts at all. How many genetic counselors did you see?

Capri:

So we did see. We saw two while I was pregnant and then we saw one after he was born at Maine Med.

Angela:

So how were things going after that, as your pregnancy progressed?

Capri:

He was on a growth restriction as well. He wasn't growing as they would like, so that did cause some issues, and they did decide later into my pregnancy, around 26 weeks, that they would like to take him early. I felt like I had all the information at that point. Me and his dad already decided that we were obviously going to keep him and that we were going to make sure that he had all the best resources, and we were just getting everything set up and ready for him, whether it was seeing specialists after he was born, whether it was figuring out care plans for five years down the road. We were trying to figure that all out and we had a lot of support, which was great.

Angela:

Now is there anything else you want to share about the pregnancy Geez, I'm just so glad you got a second opinion.

Capri:

Yeah, no, me too. It was such a crazy feeling because it was like every day me and his dad were talking about like if we were being selfish, wanting to have him here with us, because were we chanting him, having a life of suffering and were we just wanting him here because he is our baby and was that really what was best for him? Is our baby and was that really what was best for him? And it was every night talking about that. And it does take a toll, because no one ever wants to think about not having their child or side with that. But especially after having your baby grow with you for over 24 weeks you heard the heartbeat, have all the scans, you have fallen in love with your child. So it I just I'm so happy with the decision that we made and I will never, ever regret being his mom, no matter the battles that we face ahead.

Angela:

Yeah, it's just that, really trusting your intuition over the fear you know.

Capri:

Yeah, and that, and that was a very big thing, because you, when you go to the doctors or the specialists, you go there because they have the information, they know what they're talking about. We go to them because we do not know. So when you have doctors that make you feel like what they're saying is so, so wrong, it makes you really question everything and it really does make you realize. When parents say they know their children better than any medical professional, they truly do, and I never understood that until having my own child.

Angela:

Yeah, totally. So now to get into your labor and birth story. How did that all unfold for you?

Capri:

So he was going to be born early anyways, by a C-section, and that was due for April 11. That was due for April 11th. On about a week before April I started feeling contractions and things like that. But the doctors just said you know, they're just severe Braxton Hicks, you're not dilated, you're okay, go through it, we'll see you on April 11th. Down in Portland On April 11th I would have been 37 weeks and two days, and then April 1st came. They were getting worse. I was having actual contractions and so I actually rushed over to Lewiston and spent all morning in labor and delivery with my mother-in-law. Spent all morning in labor and delivery with my mother-in-law. They said you are a centimeter dilated. We send women home at even six centimeters. Go home, have your go-to-your appointment on the 11th in Portland, you'll be okay. Later that night by eight o'clock my water broke, and by 1.18 on April 2nd is when I gave birth to Bellamy.

Angela:

Oh my gosh. So how did that go? So your water broke when you were at home.

Capri:

Yes, and at first I thought I peed myself, but then I realized there is no way my bladder held that much water. We need to go. I skidged right past his dad and went straight to my mother-in-law and was like my water broke. We need to go.

Angela:

So did you guys go down to Portland?

Capri:

We did. We went down to Portland and we went to labor and delivery. I called them on my way there to let them know that I was coming and that I was coming a little sooner than expected, and they had a room ready for us. And when we got there there was a nurse Gabriela that took care of us and she was amazing Every step of the way Talked through, she knew about all of Bellamy's issues, made sure to keep me updated About how he was looking on the monitors, as well as myself, and as I was going into my C-section which, for C-sections, even though you can have someone in there with you as you are getting cleaned up and you are getting your spinal, they cannot be there. They come in after that. So she was my lifesaver. She kept telling me to breathe, was looking me in my eyes, let me hold her hands, talked me all the way through it and she made it seem like I was there for two seconds and she did great.

Angela:

So you had a pretty positive C-section experience. Is that I?

Capri:

did. It was very good. It felt like it was super quick. As soon as I heard him cry for the first time, it was the most magical thing ever. All the doctors were super sweet. The anesthesiologist was asking me questions all the time, how I felt. Even the doctors doing the surgery were talking to me and explaining everything every step of the way and it was just a very comfortable feeling and I was very lucky for that. So my recovery was really good. I definitely pushed myself in the beginning because I was still in shock and I was up walking within 18 hours of having my surgery. The nurses kept telling me that just because you can doesn't mean it's the best idea, because by the time the 24, 48 hour hit I was in a lot of pain and I was telling every single nurse that they were right.

Angela:

Now, how about him? Was he able to stay with you, or was there like a?

Capri:

no, he he was. He was instantly brought to the NICU and he was in the NICU for 43 days and we left on the 44th day, so his dad got to go with him first. I did have to wait a little bit before I saw him, but the doctors were really great and they brought me right down into his NICU room and my mom and mother-in-law were there and they had them step out of the room so we could have those moments alone as a family of three, and it was the most beautiful feeling seeing my son and seeing his dad, just the love that he instantly had in his eyes for him. It was the most beautiful thing.

Angela:

Was it not as bad as everyone had sort of prepared you for?

Capri:

So it really wasn't. When he was born and in the NICU he never had to be put on any kind of oxygen. He was thriving and they were very, very happy with what he was doing. But they did want to start monitoring his heart to see if they would have to do surgery right away or if it was something that they could hold off.

Angela:

Wow. So, oh my gosh, how did that make you feel to just kind of leading up to the surgeries, have a lot of these like uncertainties, like so many, and then to see him moving and it was honestly a feeling of relief that seeing him, I mean even cry, moving his body.

Capri:

Those are all things that my fiancé. He looked at me and he said that he just knew that he didn't have the brain condition, that he was just perfect and he just knew and thankfully he was correct.

Angela:

Yeah, so if you'd share with me kind of how things unfolded after his birth.

Capri:

So the NICU team was really amazing. They were so sweet and they all loved him so, so much. At first it was really difficult thinking about the fact that he wasn't coming home with us right away. But knowing that all of this was being done for his safety and for him to be able to thrive and be his best self in the future is what we had to keep telling ourselves. To continue to push through this with positivity, because even though he is a baby, he senses the emotions and the feelings around him and we didn't want the sadness, the poor baby, the glooming all around him. We wanted him to have that positive reinforcement from the beginning, not only for himself to always have, but just to have that extra little bit of thriving within himself when he does go into surgery and he was luckily didn't have to have surgery right away.

Capri:

He had surgery on July 2nd, so he that was the day that he turned three months old. We checked in on the Sunday before so he could get all of his labs done testing. He also couldn't be on any formula or breast milk for up to six hours beforehand, so they had him on liquid IV so he wasn't getting dehydrated, and at that point we were checked into the PICU at Barbara Bush and during that time he was on a feeding tube and they were just prepping him. We were meeting the whole surgical team meeting who was going to be taking care of him. On that floor they explained his whole surgery to us and what he got done was a VSD repair, which is a hole in your heart that most of the time when children are born with holes in their heart they potentially close on their own.

Capri:

His, where it was placed, would not close on its own because blood flow was forcing itself through it at all points in time and pushing extra blood to his lungs. So his normal like sleeping respiratory rate was into the 80s. He was sleeping like a marathon runner and, for example for people who do not know a normal child's respiratory rate is normally between about 20s to 35. The highest I've ever seen it was into the 130s. He did have open heart surgery done, so he does have a zipper scar that is completely down his sternum. His sternum was cracked open to have that fixed. He also does have an aortic arch, which is a narrowing in your aorta, and we are very thankful that he did not need surgery done on that as well. That will have to be monitored for until his heart is fully grown, just to make sure, as more blood is trying to push through it, that he won't need the surgery again.

Angela:

How did he do with?

Capri:

it. So he did absolutely beautiful. He had his surgery done on July 2nd. It took six and a half hours, which they said. If everything went perfect from beginning to end it would be six hours. So I would say that was a pretty perfect surgery. He also was home by July 4th.

Capri:

We were expected to have a two-week hospital stay, just about and he was home and discharged less than 48 hours later. So after his surgery his surgeons came in and talked to us and told us how it went and they said that everything went great, that he would be coming off of the ventilator on his own time, not to be worried if it takes him a little bit. Some kids take up to 48 hours. He was off within 17. And as he was getting through, their biggest thing was seeing how, if his body would start quickly adapting to the new heart rate and to the new respiratory rate, see how he would be taking his bottles, because at that point he's been on a feeding tube well, an NG tube, which is up through your nose and down into your stomach. He was on that since he was five days old until his open heart surgery, and within a week of having open heart surgery we were able to take it out and he now takes full bottles.

Angela:

Wow, oh, that's so great. So he's just been having a great recovery, huh.

Capri:

Yeah, he's absolutely thriving. He sees multiple people that take very great care of him. He sees physical therapy, occupational therapy. He sees cardiology and home nurses, his primary care doctor. He sees them all and in every aspect. They're all very proud of him and, as his parents, we could not be more proud, just because, as an adult, I couldn't imagine going through so much having open heart surgery, being home within 48 hours, not only that, within the same week, having to lay on my stomach and hold my head up.

Angela:

Are there any brain?

Capri:

issues that you know of. So he does still have fluid in his brain and he does have a smaller cerebellum. It's just not as bad as they believed it to be. We are still going through neurology but as of right now, they feel comfortable with waiting until he's a little bit older to scan it again, because he's absolutely thriving in the fact. At seven weeks he's rolled over. He's been holding his head up since three weeks old. He picks his feet all around, he grabs things, he's very self-aware, he takes his bottles. He's doing everything that they were questioning or thinking that he was at least going to be delayed in.

Angela:

That's incredible. So now, if you were to give advice to someone who's expecting, or even new parents or parents going through some of the same things that you have gone through, what would be the biggest thing that you'd want to share?

Capri:

so for new parents in general, especially when your baby is first born. Take that time for you and your little family that you just created. I know everyone is excited to meet your baby. Everyone is excited to see you and see how you're doing, but you're really going to want to take that time to cherish the moment. Whether it is your first baby or your third baby. You're going to want to take that time with just you as a little family, and never feel bad for asking people to step out of the room. Never feel bad for asking for your child's back, especially as a new mom.

Capri:

I know I went through a lot, especially when he would cry. Everyone would tell me oh, I got it, I got it. No, I got it. I am his mom and I understand that. You have done this a time or two yourself, but let me do it now. It's my turn.

Capri:

And for families that are going through children that have heart defects, brain issues, just know, especially at such a young age, your child will not remember this time.

Capri:

It will affect you more than it ever affects them, even as they are getting older and, let's say, they turn five, six years old and they have to go through surgery, then or even again, it will still affect you more than it affects them.

Capri:

Our kids are truly, truly resilient and they will make it through anything, and the reason why they are so brave and is so strong is because of the parents they have behind them. Always remember that, and you are never, ever wrong for questioning a doctor's opinion or statement. If you ever feel like and this also goes for all parents in general if you ever feel like your prenatal care, your labor care, your after labor care, I mean even your child's pediatrician if you feel like they are up to your standards or meeting you or your child's needs, say something, do something. Do not be afraid, don't feel guilty that you might hurt their feelings. It is their job to give your child the best care, and if you feel like it's not the best care, it is your job to make sure you get the person to do so.

Angela:

Yeah, absolutely, you are so right and you are also so very, very brave and strong. Thank you. Are there any other resources that you want to share that were helpful?

Capri:

There is one, a very big one, the Ronald McDonald House in Portland. There's also one in Bangor. They are very, very great facilities that I feel like a lot of people don't realize they are there or what, what those kind of houses need until they are in a situation where their child is in the hospital, whether it's for a week, 43 days. I've seen families there that they're that. They've been there for nine months. Nine months of free housing, food, support, and every volunteer does that with a smile on their face.

Capri:

If that is something that you've never heard about, please, please, look into the Ronald McDonald programs, the housing, the fundings, things like that.

Capri:

It is a very, very great and big resource and not only do they help the families, they help the children, they help provide formula, diapers, things all around, and it's just a very great facility that I wish had more recognition, because they truly, truly deserve it. And they also do take volunteers, whether it's every week or just a one-time thing. So, if anyone ever has the time and they do accept high school students as well, because I know a lot of high schools take volunteering as credit they do take high schools as long as they have parents' permission or a parent there. And not only are they a great facility for people that need help, they also have programs for special needs adults to come in and learn how to do basic living needs within a house, so they can come in learn how to do their own laundry, cook their own meals, do things like that. So all around it's just a very, very great thing that just needs a little bit more recognition and a little bit more appreciation.

Angela:

Well, thank you, Capri, for sharing your story with us.

Capri:

Thank you for having us. It's definitely something that I want parents to be more aware about, but also for parents to know that they're not alone, because I know I definitely felt like I was and just having a simple, you know person sharing their experience especially someone local would have truly, truly meant a lot. And there's so many different kind of like birthing experiments from the completely horrid to the completely amazing. There's such a vast kind of children's and the issues that they can have or they can be born completely fine, and it's just such a wide range of an experience that you know you get pregnant and you have a child and so many people can do that, but how many experiences are within that one thing that so many people can share is just so truly amazing to me and I'm just, I'm so thankful all around for everything that we have experienced, because it's definitely made me and my family grow as individuals and really made us have the realization of how truly life is and how beautiful it is to have.

Angela:

Yeah, absolutely. I'm so glad we were able to connect.

Speaker 3:

Me too, it's been great talking to you.

Angela:

And that's the end of another episode of the my Main Birth podcast. Thank you for joining me and listening. If you're looking to document your birth story or if you're interested in doula support for your upcoming birth, head over to my website mymainbirthcom and check out my packages. Website mymainbirthcom and check out my packages. I'm a certified professional birth photographer and an experienced doula, and I offer in-person services to families throughout the state of Maine, as well as virtual birth coaching worldwide.

Angela:

I want to invite you to grab my top free resource for newly pregnant moms. It's called 37 questions to ask your care provider Whether you've already established care or if you're in the process of interviewing new providers. This is for you. Not only are you going to get the questions to ask, but I also share how to assess their answers and the major red flags that you should be looking for. So go grab that. It's at mymainbirthcom slash download. Thank you again for tuning in and I look forward to bringing you more amazing birth stories. Don't forget to subscribe and leave me a review, and I'll see you back here again next week.