“Chanie’s Story, Pregnancy #1: Preterm Birth and Neonatal Complications”

Chanie, who has two interesting birth stories. In this episode, Chanie shares the story of her first pregnancy and birth, which includes water breaking at 32 weeks, a week-long stay in the hospital before giving birth, and her baby’s brain hemorrhage. As a listener of the podcast, Chanie found strength in hearing other people’s stories, and hopes that “my story can give somebody else some strength as well.”

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Dr. Fox: Welcome to “High Risk Birth Stories.” I’m joined today by a guest who wanted to remain anonymous but will be going by the name Hani. When I interviewed Hani, it became clear that she actually has two very interesting birth stories. So after finishing the recording session, we decided to break it into two separate podcasts. Today, you’ll hear the story of Hani’s first pregnancy, preterm birth, and neonatal complications. Next week, you’re going to hear part two, which is the story of her second pregnancy.
So we got some great news a few weeks ago. Apparently, “High Risk Birth Stories” is now in the top 200 health and wellness podcasts in Iceland. How about that? Shout out to all our listeners in Iceland. Thanks for listening. We love having you on the team. All right, everyone. Have a great weekend, and Monday, on the “Healthful Woman” podcast, we’re going to continue with part two of our six-part mini-series on twins.
Welcome to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman” podcast. I’m your host, Dr. Nathan Fox. “High Risk Birth Stories” is a podcast designed to give you, the listener, a window into the life-changing experiences of pregnancy, fertility, and childbirth.
All right, Hani, welcome to the podcast. Thank you so much for volunteering to tell your story. I appreciate it. How’re you doing today?
Hani: I’m good. Thank you. Thank you for having me.
Dr. Fox: Fantastic. So, Hani, you are a listener of the podcast. And we were talking before, that the way you found our podcast was you were listening to a different podcast from the Yoledet Academy, correct?
Hani: Yes, that’s correct.
Dr. Fox: I love that. Well, I’m glad that you came aboard. What made you decide to reach out to me to tell your own story?
Hani: I think that the story of my children’s births are very unique. And on top of that, I just found a lot of strength in listening to other people’s stories. And I hope that my story can give somebody else some strength as well.
Dr. Fox: I do believe that that’s true. That’s certainly something I felt before we started the podcast. But all the more so, since starting this, hearing people tell their stories about their own birth experiences has been very helpful to me, first of all, just as a person and as a doctor, but certainly to the person telling the story, and absolutely to the people listening. There’s so much to learn from these stories on top of it. They’re just pretty cool.
Hani: Agreed.
Dr. Fox: We’re going to be talking, I guess, primarily about the birth of your twins. But we’re also going to start back about the birth of your oldest son, right? You have three children, correct?
Hani: Yes, that’s correct.
Dr. Fox: Take us back to your first pregnancy. So just sort of basically what’s going on early in pregnancy, where you are in life, and how that went. And then we’ll do that pregnancy and then we’ll go into your twin pregnancy.
Hani: Sounds great. So with my first pregnancy, I was aware that I had PCOS and I had irregular cycles. And funny enough, I did not know I was pregnant until I was 12 weeks. I did not have any symptoms, regular symptoms of pregnancy. The one symptom that I had was very severe migraines. I had gone to my general practitioner, and she said, “Before I give you any strong medication, let’s get an eye exam done. So, it could be that maybe your eyes have shifted something.” And so I went to the eye doctor and the eye doctor checked my eyes. And she said, “Wow, your prescription has gotten better, significantly, about 1.5 in each eye.” I had a pretty high prescription. I said, “Really? That’s weird. I didn’t know my eyes can correct themselves.” And she said, “I’ve only seen two cases like this. Are you pregnant?” And I started doing the math in my head. I was like, “Wait a second, when’s the last time that I remember getting my period?” And it was over three months prior. And I said, “No. I was told I couldn’t get pregnant naturally. Whenever we’re ready, we’ll try.” And I went straight to the pharmacy downstairs, got a pregnancy test. And I found out I was pregnant from the eye doctor.
Dr. Fox: That eye doctor is pretty amazing. And she can say, “Listen, I looked into this person’s eyes and I knew she was pregnant.” That is awesome.
Hani: And very odd. After pregnancy, my eye prescription stayed the same. It didn’t get higher again, which was a nice bonus.
Dr. Fox: Were you not trying to get pregnant? Like, were you intentionally not trying to get pregnant or you just figured, “I’m not gonna get pregnant. And so whenever I’m like really ready, I’ll go get treatments.”
Hani: So in the community where I’m from, generally birth control, right after birth, is not accepted due to the level of orthodoxy that I’m from. So we weren’t actively trying to get pregnant, but I was told the chances of me getting pregnant was extremely, like, slim.
Dr. Fox: Interesting.
Hani: So, you know, we were very…I was happy I got pregnant, but I was still, you know, within the first year of marriage, but later on, I was almost…we had almost hit our one-year anniversary when I found out I was pregnant.
Dr. Fox: Got it. And the reason you were told you wouldn’t get pregnant on your own is just because you had the PCOS and very irregular periods, and they thought you weren’t ovulating at all, is that correct?
Hani: I don’t know if that’s a proper medical term, but I was let known that I have something called brittle PCOS, which essentially is like PCOS, but kind of displays itself in different ways. There’s not like a set diet that can correct it, or, you know, like, you’ll try one thing and it won’t work. And you’ll try the next thing, it might work. And I had a lot of experience with my next children, my twins, when I was doing fertility treatments. That was one of the big problems that the doctors had, was that there was never a proper, you know, regiment. Normally, they’d figure out what kind of medications work for a person. And with the fertility issues is that the brittle PCOS kind of complicated things. They couldn’t find…they would give one dose of medication that would help me ovulate and get going. And then the next month, when it wasn’t successful, the same amount of drugs wouldn’t work, I’d have to kind of up the prescription. So that was definitely a story in itself.
Dr. Fox: Got it. Got it. So you’re 12 weeks pregnant now, you’ve breezed through the first trimester without a care in the world, no nausea, no vomiting, headaches, obviously, that you’re talking about migraines. You’re now 12 weeks pregnant, and a little bit of a shock. And so how do you proceed?
Hani: So at that point, I, obviously, told my husband and I spoke to one of my sister-in-laws, who I’m very close with. And she was pushing for me to join a midwife clinic. Where I’m from, you either have the option of an OB or midwifery, and they work together at the hospital for the birth, but not in any care, like, during the pregnancy. And I chose to go with the midwives because they’re a lot more attentive. They’re on call 24/7 where I’m from, whereas the doctors, there’s no practices, it’s almost like you have your one OB, and you see him or her, and then you go to the hospital, and you’re not guaranteed your OB. So at that point, it was my first pregnancy, and you meet your midwives, you have your team, you’re guaranteed one out of three midwives that you meet with on a rotation. And so, I was a lot more comfortable with that. Yeah. And that’s where I went, and I found the midwife clinic, and I started seeing them on a regular basis.
Dr. Fox: I’m just curious about, if you were to choose an obstetrician, you’re seeing one person. And then what would happen if you had a problem, nights and weekends? You would just have to show up in the hospital and whoever’s there takes care of you?
Hani: So every hospital has…like, every OB belongs to a hospital. There aren’t officially birthing centers. And you go into triage that your OB is part of.
Dr. Fox: Oh, I see. So it’s almost like your OB is part of like a 20-person group. And you know, there’s a chance you’ll see your OB nights or weekends, but it’s a very low chance.
Hani: Very, very low chance.
Dr. Fox: I understand. But for the midwives, they actually function in more of a group where it’s going to be one of them on call 24/7?
Hani: Yes, you’re guaranteed one of your three midwives.
Dr. Fox: Got it. And is that why your sister-in-law urged you to see the midwives instead of an OB as well? Or was there another reason? Because people choose midwives versus OBs for a lot of reasons.
Hani: Mostly for the care.
Dr. Fox: For the care.
Hani: Yes. And as well…I know that you’ve mentioned a few times on your podcast, where with an OB, you kind of see them at the sixth week postpartum moments, and before that if you have an issue with the triage here. But with the midwives, they come to your house at day one, like, the first day when you come home, the third day that you’re home, 7 days, 14 days, and 30 days.
Dr. Fox: Wow. That’s awesome.
Hani: So, like, that’s really…you don’t actually see your child’s pediatrician unless you need to because they come and take care of the baby for 30 days post-arrival, like, you know, once you get home. So there is a lot of positivity for the midwives, and I really am pro-midwives where I’m from, as long as you’re not a high-risk case.
Dr. Fox: And if there’s something that comes up, I assume they work with the OBs in the hospital, whether it’s for a visit, a consultation, a transfer, whatever it might be, it must be within a system, correct?
Hani: Yes. So if there is any sort of high-risk problem, they automatically will transfer you to an OB. But at that point, usually, during the pregnancy, it’s very hard to get the OB that you might want. So you’re kind of stuck with whichever OB you’re gonna get, like, whichever one’s available to take your case on from that hospital. But I was, you know, young, stupid, and didn’t know that there were problems. You know, you’re just very idealistic. And so at that point, you know, I just said, “Okay. I’ll go with them.” And everything was fine. We booked tickets to Israel. I went for my 20-week ultrasound. I got the go-ahead. We went to Israel for a few weeks. While I was in Israel, I had a UTI with no symptoms, which afterward I found is very common during pregnancy, ended up in one of the hospitals there for IV antibiotics. I was told before I left, you know, for my vacation that I was having a baby girl. I found out in Israel I was having a baby boy.
Dr. Fox: Oh, all right.
Hani: Yeah, there was, you know, a nice bonus to that.
Dr. Fox: Hello.
Hani: When I came back home, on the flight back, I suffered severe edema. So as soon as I got home, I went to see my midwives right away at their clinic. You know, they checked me out. I did another ultrasound, it confirmed it was a boy because at that point I was…I didn’t know who to believe.
Dr. Fox: Yeah, you wanted a tiebreaker. No, I’m just curious in…where you were being cared for with the midwives, did they do the ultrasound or read the ultrasounds or do they send you to like a radiologist or an obstetrician, meaning how does it work in terms of the actual ultrasounds?
Hani: So the ultrasounds, you go to a radiology clinic.
Dr. Fox: Got it.
Hani: And obviously, the radiologist reads and gives them the report, and then the midwives will tell you the results. They had told me I was having a girl.
Dr. Fox: And also just to be clear, because not all of our listeners may have gotten this, even though you’re being cared for by midwives, you were not anticipating or planning to have like a home birth with them, correct? They deliver in the same center, the same hospital that the obstetricians do?
Hani: Exactly.
Dr. Fox: Got it.
Hani: So you do have the option with midwives, here, to give birth at home, to give birth…recently, they actually opened a birthing center, the midwives. I think it was partly because of COVID, that they, parents, did not want to give birth at the hospital, which is understandable. And you could give birth at the hospital that they’re part of. And if there’s any problems during the birth, which, you know, as we’ll speak of, you’ll hear my story, then they transfer your care immediately to the doctor on call.
Dr. Fox: Got it. All right, so you’re home from Israel, you were treated in Israel for the urine infection. You’ve come back, you had an ultrasound, they confirmed tiebreaker, it is a boy, and they’ve evaluated you for the edema for the swollen legs, I guess it was?
Hani: Yes.
Dr. Fox: And how far pregnant are you at this time?
Hani: At this point, I’m 26 weeks pregnant. I work in education. I was told it’s okay to go to work. You know, everything else seems fine. My blood pressure, you know, everything was perfect. My blood work, no risk whatsoever. I just kept going. And in the meantime, Passover Pesach comes and goes. It was a very stressful holiday. The week after Passover, I actually went into work. And a friend of mine said, “When are you going to pack your bag for the hospital?” And I was like, “I’m only 32 weeks. You know, I’ll wait till the 36 mark. You know, my mom gave birth late. My sisters gave birth late, you know, there’s no early bloomers and my family.” I went home. And that night, I started packing my bag. And when I packed my bag, I felt like I peed myself. And I called the midwife. You know, I’d read up a lot. During the pregnancy, I was reading a lot. And I read that, you know, if you feel the rush of water and it doesn’t stop, it goes again and again, then chances are your water broke.
And I called my midwife who at first said, you know, “Maybe you just went to the bathroom.” And I said, “No, no, it’s happened a few times. I was packing my bag.” So she told me to come meet her at triage in the hospital. And which I did. And while I was waiting for her outside, she told me not to go in because they treat you differently when you do come in with your midwife, they take it more seriously. And so while I was waiting for her right outside triage, I didn’t have any contractions or whatnot, just the water broke. And while I was waiting for her, nobody had told me to you know, bring along the towel or, you know, it was kind of embarrassing to have the janitor at the hospital just coming in mopping up after me every 10 minutes or so. It was very embarrassing.
Dr. Fox: Oh, God. Poor thing. I mean, we see that on the labor floor. None of us think unpoor [SP] to people who are doing that, but, obviously, on your end, it’s embarrassing. Understood.
Hani: It was definitely mortifying and I didn’t know any better. But I get into triage, they do confirm that my water is broken at 32 weeks. And right away I was admitted into the hospital. I didn’t have any contractions at that point. And I was told that I might just be in the hospital for the long haul. So this was on a Sunday. And I was there the entire week and, multiple times a day, I was connected to the machine to check the baby’s heart rate. And I was taken, twice a day, for ultrasounds. I was not allowed to stand up besides when going to the washrooms. And once a week I was allowed to…the entire week I was allowed once to go take a shower because they were so nervous that I would bring on contractions and start the labor.
Dr. Fox: Were you still under the care of the midwives or did they transfer you to the obstetricians at that point?
Hani: So officially, I was still under the care of the midwives. And they came into the hospital. Obviously, there’s nurses and doctors that came in to check on a regular basis as well. But for whatever reason, my care was not transferred over yet to an OB. And that Saturday night, my husband stayed with me the whole week, you know, with our eldest child. And that Saturday night, he went home to just bring a few more things. And at that point, I went into full force labor about 11:00 at night. I called him to come back and he said, “Do I have enough time to grab some pizza?” And I said, “No, come back to the hospital.” I called the midwives. And, you know, I was 33 weeks and a day.
Dr. Fox: Wait, you were in the hospital and you had to call them? They don’t call them, the hospital?
Hani: The way this hospital was set up is that, any high-risk patient that was, you know, put on bed rest is in a separate wing in the labor and delivery. Most of the time, if somebody is on bedrest in this specific hospital, they’re actually put into the postpartum unit. But because they were…it’s very cruel.
Dr. Fox: Cruel, not cool?
Hani: Very, very mean to put a pregnant lady with a postpartum woman.
Dr. Fox: You had to share a room?
Hani: They would share a room. The hospital is a very busy hospital, and they don’t give the postpartum, like, single rooms to, you know, moms that are waiting, for whatever reason.
Dr. Fox: Right, right, right, antepartum. And you mentioned that you were very young. If I could ask, how old were you at the time?
Hani: I had just turned 21.
Dr. Fox: Okay, got it. So you’re 21 years old, and you’re in the hospital with your husband, basically, other than that night, for a week, and you’re stationed now on the labor floor, you said.
Hani: Exactly. So what happened in my situation is that when they were checking the baby, the fetal monitoring, they picked up one contraction here, one contraction there. So the hospital’s policy is that if somebody has contractions, that they need to be in a labor and delivery room, and you have to go 24 hours without a contraction in order to be put into the postpartum unit. This is just the way this specific hospital works. The other hospital I gave birth at is completely different. So I ended up in this labor and delivery room, which was in the furthest wing of the labor and delivery floor because those rooms are reserved for people that were in my situation. So there’s no TV, there’s very terrible Wi-Fi access. It’s a very old-fashioned room I was put in. It was definitely not a very pleasant situation.
Dr. Fox: You have to be in bed all day, you said. And they won’t even let you shower?
Hani: No, I wasn’t allowed to stand up to shower because every time I stood up, my water would break again. And they were trying to keep, you know, the baby, I guess, as hydrated as possible.
Dr. Fox: As a side note, I don’t know if they would still do that nowadays, but the water’s broken whether you stand up or not. It’s just if you stand up more will leak out suddenly, potentially, but it’s not like if you lie down it’s going to stay in. And for all we know, it’s better that it comes out, like it gets washed out. The baby continues to pee. Yeah, when we have people in the hospital for that, you can shower as often as you’d like, unless you’re, like, actively in labor and we have to monitor the baby or something. But, oh, wow. All right. That’s a little draconian. Okay, okay, well.
Hani: It was very, I would say, backward, I guess.
Dr. Fox: So now your labor, it’s Saturday night.
Hani: Saturday night, I’m in labor. I call my husband, he comes, I call the midwives. So because I was 33 weeks and a day, my midwife, who had a cough and a cold, she was not allowed into the labor and delivery unit because the baby’s considered very high risk.
Dr. Fox: Sure.
Hani: So she sent her back up. Now, this is no indication to the midwives out there. For whatever reason, this midwife was not the best midwife. She only showed up after my birth, which was four hours after I went into labor. And she lived, apparently, a block away from the hospital.
Dr. Fox: And she was not going to get pizza with your husband?
Hani: No, she was not going to get pizza with my husband. And there this wonderful nurse who took care of me. Apparently, she had gone to school with my husband in elementary school. And, you know, I had a very quick labor, and so quick that I felt, you know, I had gotten an epidural, which didn’t fully kick in. I felt the pressure of the baby’s head coming and I asked the nurse to check me and she said, “It’s impossible. It’s a first-time birth. There’s no way.” I said, “Do you think I’d be asking you to check me if I didn’t feel pressure?” Like, nobody wants to be voluntarily checked. And she checked, and she says, “Hold on, we’ve got to call everybody.” And out of nowhere, about 40 people just crowded in the room. There was a respiratory team, and a NICU team, and a pediatric team, and, you know, all these doctors that wanted to see this birth. This hospital is not a high-risk hospital, so this was very unusual for them to have, I guess, a 33-weeker.
Dr. Fox: Did they have the capability?
Hani: They did have the capability. They did warn me that they might have to transfer/send to another hospital that has a better NICU here. I don’t know what it’s like in New York, but here there’s levels of NICU.
Dr. Fox: Sure. Yeah. Same.
Hani: So the hospital where I gave birth in, my first hospital, was a level II NICU, so they could provide respiratory support, but they don’t generally have long-term intubated patients, they cannot do surgery or any procedures on the babies. And, you know, then there’s level III hospitals that deal with a lot of the respiratory issues and level IV that deal with surgery. And these level II hospitals, generally, they call the NICU, feeding NICU where they encourage…you know, that’s where the babies that have trouble feeding, or need sugar regulation or whatnot, that’s what this NICU kind of…it’s a step down kind of. And they did let me know that if there were severe respiratory problems that he would be transferred to another hospital. Thank God, that didn’t happen. But they did…you know, I birthed him naturally. And no tearing. And he came out. He actually was not breathing when he was born. And the doctor gave him a nice slap on the back, they suctioned his lungs out and he started screaming and had a really nice Apgar score.
Dr. Fox: I’m surprised they were surprised it went so quickly because at 33 weeks, you know, they’re not big, right? How big was he when he was born?
Hani: So he was four pounds and one ounce.
Dr. Fox: Yeah, like, they didn’t see it.
Hani: [crosstalk 00:21:23.369] that is bigger.
Dr. Fox: Yeah, but they come out faster. Four pounds versus eight pounds, just, I mean, geometry, it’s gonna come out faster typically, you know, plus you’re in booming labor, your water has been broken a week. Yeah, usually we expect those labors to go pretty quickly. So I’m surprised they were surprised.
Hani: One of the reasons why they felt like the baby probably wasn’t coming is because I had back labor. So the monitors weren’t picking up the contractions as well. So, again, I’m not so techie, but you know, when it’s back labor, the contractions that are picked up seem a lot smaller. That’s what the nurse told me. So they didn’t actually think I was, like, in serious labor. And when she checked me, after just a couple hours of having labor pains, you know, I was nine centimeters dilated, like, so quickly. And I had him, you know, around 2:00 in the morning, they put him on my chest literally for 25 seconds and then they had to take him right away to the NICU. The hospital room was not set up, I don’t think they were planning on me giving birth anytime soon. So it wasn’t set up for preemie birth. They did have the little resuscitation and mini-incubator in the corner of the room that they had brought in. But more than that, they couldn’t really prepare the baby getting, you know, all settled and whatnot. So he was taken away pretty quick. And me and my crazy face told my husband, “Run after them, don’t let them switch the baby.” Like, you know, I was so nervous, they were gonna like make a mistake and trade our baby with somebody else. But they didn’t.
Dr. Fox: That’s not so crazy. I mean, they’re not gonna switch the baby, but that’s totally normal. So many people after the baby’s born, if the baby’s going somewhere else they say like, “Go with the baby. Like, I don’t want this baby to be left alone.” And there’s a lot of reasons for that. That’s a very common fear that people have and a very common request to send a family member like, “Go with the baby. Keep your eyes on the baby at all times.” That’s very, very common. So, yeah, don’t beat yourself up over that, very, very common.
Hani: And I tried with my utmost effort to just get out of bed as soon as possible. You know, the epidural kind of wipes out your waist-down function, and I just had to go see my son and I just…it was very overwhelming how long it took for the epidural to wear off and be able to stand up enough to get into a wheelchair to be wheeled to the NICU. And overall, he was okay.
The hospital policy is, before 36 weeks, they don’t send the baby home under five pounds. And obviously, he wasn’t eating at that point. He just, you know, before, I think it’s 34 or 35 weeks, the baby still needs some help with sucking and whatnot. So right away, they had to give me a breast pump to get the colostrum going. And he was in the hospital for about two and a half weeks. And he was a real champ. He started gaining weight and…he wasn’t nursing, but he was taking bottles. The midwife who couldn’t come because of her being ill, even though my care was transferred to some random doctor at the hospital, who I…if I didn’t have his name on the birth certificate, I wouldn’t know what his name was. I had literally just met him as he was catching my son. She still came to visit me at the hospital. And you know, even though she was no longer really overseeing my care, but we developed a very close relationship.
And after about two and a half weeks, he was ready to go home, and we were ready to take him home. And my mom came with me to the hospital, and my husband, to just kind of help me pack things up and get out of there. And while she was waiting for us to sign the paperwork, she was kind of swiping through the pictures on my phone. One thing that my midwife said, and this is always a tip for any NICU mom, is you never want your kids, who are NICU babies, to not have pictures of themselves. As much as it’s hard to look at those pictures, you don’t want a baby saying, “Why don’t I have baby pictures?” So my midwife encouraged me to take one picture a day, at least of my baby, so that I would have pictures to show him as, you know, when he got older. And I did that.
And my mom’s flipping through these pictures, and she looks at my son who’s still in the incubator, the open isolette, and she says, to me, “His head looks funny.” And I said, “What do you mean?” And she said, “Look, he kind of, you know, look at the picture here, look at his head here.” And his head, you know, she was right, I was living in the hospital pretty much. So when you don’t see, you know, when you see somebody on a regular basis, you don’t notice their, their changes are subtle changes. But when you don’t see somebody for a week, and then you come, you can notice a big change. Right away, she pointed it out to me, I brought it up to the developmental pediatrician. And they measured his head. And his head had grown, I think five centimeters or so in about a week, which is not normal. And they right away, took him off for a CT scan. And they saw that he had a hemorrhage in his brain. And so, instead of going home, we were put into an ambulette isolette. We were transferred to the pediatric hospital in the city where I live, and which is obviously a level IV, top-of-the-line hospital. And we were brought to their NICU there.
And at that point, I was very overwhelmed. My husband didn’t know what to do with himself. And I met with a whole bunch of doctors. And they were trying to figure out what was wrong with him, you know, how severe it was, what they were gonna do. Because once a baby has a hemorrhage in their brain, there’s nothing really that they can do, they kind of just have to let it bleed it out. And you know, then once it stops reading, they can kind of figure out what to do next. And so my baby had, you know, additional CTs of his head and he had an MRI to kind of assess the damage.
And we were put in touch with an amazing neurosurgeon at the hospital. And he came back with the unfortunate news that my son’s ventricles were damaged in his brain. The ventricles are…I know you know what the ventricles are, but the ventricles is what drains the cerebral spinal fluid from the brain into a different cavity right in the body. And you know, that way, there’s no fluid buildup in somebody’s brain, and his ventricles stopped working because the blood particles that dried up, blocked the ventricle, I guess, passageways. So we were told that the only way that he would survive was to get a surgery that they would put in a shunt, which is a valve, a one-way valve, that drains any additional fluid from the brain into his stomach cavity.
And I was beside myself. And we spoke to multiple doctors from across the world because we had a few different options of shunts. And here I am, 21 years old and not knowing, like, this is a life and death decision for my son. And we kind of came back with the fact that the best shot for him would be something called a VP shunt, which is kind of like the base model of all shunts. It’s not electric, it’s not magnetic. There’s no…
Dr. Fox: Yeah, just the tube.
Hani: …different settings and whatnot. And after about a week, again, he had to relearn how to eat. We went home, I would say, about three weeks or so after he’s on events for about a week. And then he learned how to eat like the next two weeks. And so, in total, we were in the hospital for about five and a half weeks. And we came home. Yeah. And it was a whole other ballgame with him. And he had to have a few shunt replacements as an infant because…they did tell us that as an infant, it’s very possible that the shunt would get blocked with blood particles that are still kind of lingering around. So he did have to have two additional brain surgeries. And thank God, there were no infections and whatnot. So that’s kind of the story. We were followed by the NICU
Dr. Fox: Yeah, so two questions. First of all, most importantly, how’s he doing now after all that?
Hani: So right before COVID hit, we had actually gone back…we were obviously being followed by the neurosurgeon until, you know, until the end of time, right? We had just gone right before…I think it was the week before COVID hit the city where I live in. And he had an MRI, and the doctor was taking a really long time to come and speak to me about the results. And I was like, “Okay. What’s going on?” And he brought me over into the radiology room where all the screens are. And he showed me that the empty space, you know, in the brain, like where it was damaged, actually, it was about…it was a whole front right ventricle was gone. Like, we knew that he did not have a front right ventricle. And for whatever reason, I call it a miracle, he called it brain plasticity, my son’s brain kind of reformed itself. And out of the whole brain-damaged area, there was about the size of a dime on the screen of what was still brain-damaged. So he is a regular child, he hits all his milestones. He drives everybody crazy. And he’s doing what he’s supposed to. You know, he gives people a run for his money, but thank God, we’re very, very blessed. We got really lucky with him.
Dr. Fox: Wow. Wow. Yeah. My second question was, can you imagine what would happen if your mother didn’t notice that?
Hani: Yeah. So I did find out from the hospital that, at the end of the day, if he would have come home with me, he probably would have died within 48 hours.
Dr. Fox: Wow, that is just…
Hani: Just based on how severe the brain bleed was. So, yeah, but, you know, I’m forever grateful to my mom.
Dr. Fox: Add it to the list of reasons to be grateful to your mother. That is a huge one.
Hani: Yeah.
Dr. Fox: Wow.
Hani: A very huge one.
Dr. Fox: It just confirms something that we know very, very well. Listen to your mother. They know what they’re talking about. You know, no matter how much medical training you have, when your mother walks in and says, “Take a look at that,” you should take a look. They know what they’re talking about. I’m so happy he’s doing well.
So we decided to end part one of Hani’s story here after Hani and I finished talking about her first birth. Next week, we’re going to drop the rest of her story in part two, when she discusses her second pregnancy.
It’s hard to imagine what it was like as a 21-year-old new mother dealing with preterm birth and a baby with bleeding in the brain. On top of that, it’s hard to imagine how much worse it could have been if Hani’s mom didn’t notice the changes in our grandson right before he was supposed to be discharged and go home. Fortunately, she was astute enough to notice and savvy enough to say something. Sometimes people think that they don’t have the option to speak up in that setting. But that would be a mistake. Doctors and nurses are not perfect, and we absolutely listen to and appreciate any concerns that the patient herself or family has, or at least we should. So definitely speak up. It probably saved Hani’s baby’s life. Thank you all for listening. Have a great day. Have a great weekend.
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The information discussed in “High Risk Birth Stories” is intended for informational and entertainment only and does not replace medical care from your physician. The stories and experiences discussed in our podcasts are unique to each guest and are not intended to be representative of any standard of care or expected outcomes. As always, we encourage you to speak with your own doctor about specific diagnoses and treatment options for an effective treatment plan. Guests on “High Risk Birth Stories” have given their permission for us to share their personal health information.