how i got this baby

The Mom Who Had 3 Babies With Cystic Fibrosis

Illustration: Palesa Monareng

Because no two paths to parenthood look the same, “How I Got This Baby” is a series that invites parents to share their stories.

Californians Michaela and Jacob were elated when, six years ago, they learned Michaela was pregnant with their first baby. Michaela, then 25, had a degree in health science and hoped to go back to school to become a nurse. Jacob, 26, was an almond farmer but planned to pivot in a few years to become a police officer. But first, they both wanted to start a big family.

The pregnancy went smoothly until the 24th week, when Michaela noticed the baby didn’t seem to be moving as much. Nervous, she called her obstetrician, who told her to come in for an ultrasound. “After the test, my husband and I met with the doctor in his office, and he said the baby looked okay, but he saw something in his stomach,” Michaela says. “He didn’t seem worried. But he wanted me to go to Stanford Health’s satellite care center in Modesto to follow up with a maternal fetal medicine specialist for a second look.”

The Stanford physician performed a second ultrasound, which led to a discovery: Their unborn child had a twist and obstruction in his bowel, which was a sign of cystic fibrosis (CF), an incurable disease caused by a recessive gene mutation in both parents. CF prevents the body from breaking down sticky mucus, which can lead to dangerous complications, including premature death. (The average life expectancy for people with CF who reach adulthood is 44.) 

“The blockage was a sign of CF, but the doctor said it wasn’t definitive; my husband and I would need genetic testing to see if we carried CF gene mutations to confirm he had it,” says Michaela. Neither Michaela nor her husband had cystic fibrosis, and no one in their families did either, so the couple clung tightly to the slight chance the blockage was related to something else. But soon, their own genetic testing revealed the harrowing truth. “I found out about my mutation first, and then my husband learned about his,” she says. “I broke down and cried. I was a first-time parent, so I was already nervous. We were really worried about the baby.”

Michaela shares how she and Jacob came to terms with their genetics, how they grappled with their first two children’s traumatic births and infancies, and how an experimental therapy allowed her to protect her third baby with CF from the same precarious delivery and babyhood.

On adjusting to their first baby’s diagnosis

For the first couple of weeks after we learned our baby had CF, I felt like I was walking around with a brick on my chest. We hadn’t gotten the whole breakdown yet about what life with CF was going to be like. The doctor told us not to Google, but we did it anyway. I’d search the internet and bawl.

I started having weekly ultrasounds, which weirdly gave me less anxiety because I got to see the baby all the time. They were checking him every week to monitor the size of the blockage and make sure he didn’t have an abruption in his bowel, which would be an emergency situation. I also had two MRIs, at 28 and 32 weeks, so they could get a closer look. We knew the baby was going to need surgery to correct the bowel as soon as he was born. Stanford has a world-class cystic fibrosis center, so we decided I would deliver there.

This is going to sound weird, but one of the biggest sucker punches we got was when they told us that it’s common for males with CF to be unable to have kids naturally in adulthood. Most don’t have the tube that connects the testes to the urethra, the vas diferens, or if they have it, the tube is blocked. Family is so important to both of us, so learning our kid probably wouldn’t be able to have children naturally just broke us.

But our biggest fear back then was that our son would struggle after surgery and need to be hospitalized for a long time. We’d been told he might need a stoma — an opening in the abdomen connected to a bag that collects fluid. Stanford doesn’t have private rooms in their NICU for families to stay; it’s tight in there. So that made me emotional, thinking about having to leave my baby in the NICU.

On getting induced with her first child

My doctors decided I should deliver at 38 weeks because the baby was measuring really big. I was induced, but the labor didn’t progress so I ended up going in for a C-section. They took him out — our son Jaxon — and put his cheek against my cheek, and then took him away. That killed me.

I had the C-section in the morning, and managed to make it down to the NICU that afternoon. The first time I saw him was hard: They had an IV in him, a tube down this throat, all these wires.

They scheduled Jaxon’s surgery for a few days after he was born. To correct a blocked bowel in a newborn like Jaxon, they have to cut out the section that’s damaged. But before they could do that, they had to put the tube down his throat — something called a replogle, to prevent saliva from entering the stomach. He couldn’t have anything in there before the surgery.

Jaxon ended up having two sections of his bowel removed — one up high, near his small intestine, and a second section in the lower part — which left him with two stomas that he kept for eight weeks. He was in the NICU for a week or two after his first surgery, then he moved to the hospital’s CF floor, and then he went into the pediatric ICU for a second surgery to reconnect his bowel.

I practically lived at the hospital. My husband and I stayed at the Ronald McDonald House nearby, which houses families with children being treated at Stanford. We’d go home at 9 p.m. and go back first thing in the morning. All told, we were there for two and a half months.

On coming home

The first couple of months at home were brutal. Jaxon came home from the hospital with MRSA, a dangerous staph infection that can be antibiotic resistant, so he had to take medicine right when we got home.

And Jaxon really struggled to keep on weight. Most physicians want babies to stay at or above the 50th percentile, but we struggled with that. We talked a lot with his care team about putting a feeding tube into his belly. He ate a bunch, but he was missing a gigantic chunk of his digestive system and couldn’t keep weight on.

On deciding to have a second child

My husband and I wanted to have kids who were close in age. So when Jaxon was about 8 months old, we decided to start trying.

At that point I’d been on the CF message boards for almost a year, and I hadn’t seen a ton of parents who had more than one child with CF. Our doctor told us we had a one-in-four chance of having another child with it — which meant we were more likely to have a child who didn’t have it. She said we could try naturally or do IVF, which would help us control the outcome.

We decided to just go for it — and I got pregnant. Elijah’s scans were perfect. To confirm that he was okay, we decided to have an amnio done at 16 weeks. An amnio is a test of the amniotic fluid that checks for CF gene mutations.

We were at my parents’ house when we got the call. I lost it. “I’m so sorry,” our doctor said. “But you’ve done this before, and you’ll get through it. It gets easier.” My husband tried to comfort me, but I started bawling.

Elijah was born with a ruptured bowel — the doctors’ theory is that it ruptured very early in his development and that’s why scans hadn’t caught it. I had a vaginal birth with him. Afterward, I noticed his stomach looked distended, sort of big and veiny, so they took him down for a check and found out his bowel had ruptured in several spots. He needed emergency surgery. We could not believe it was happening again.

Elijah was in the hospital for two months. Due to COVID and how fragile Elijah was after his surgery, my husband and I were the only people allowed on his NICU visitors list; my mom couldn’t even see him. The only time they let her in was when I developed a very serious case of mastitis — a breast infection caused by clogged milk ducts — that led to sepsis, a life-threatening, systemic inflammatory reaction. I was hospitalized for almost a week. Because I wasn’t allowed to see him, they let her in.

I spent a lot of time by myself, because Jacob was in the middle of training to become a sheriff. He could only be with me once or twice a week. So I would go to the NICU, and my mom would take care of Jaxon at the hotel. I have no idea how I kept it together.

Jacob kept on reassuring me we’d get through it. But it was hard. I worried about Jaxon not getting the attention he needed from us. He was only 21 months old.

On learning they were pregnant a third time

Our third, Nora, was not planned. I was taking a birth-control pill that was supposed to be safe for breastfeeding — a mini-pill that contains only the hormone progestin.

Elijah was just over a year old at the time. We wanted a third, but after everything we’d been through, we planned on doing IVF to make sure the baby didn’t have CF.

But then — somehow, despite being on the pill — I got pregnant. I remember lifting something and feeling my stomach tug a certain way and thinking, Uh-oh. I took a test, and sure enough, it was positive.

We scheduled another amnio at 16 weeks to test for CF. I was all alone, driving home, when I found out that Nora was positive. I was an emotional wreck. I called my husband and he was like, “You need to drive. You need to calm down.”

At 18 or 19 weeks, they spotted the blockage in Nora’s bowel. Soon after, I logged onto the main CF board I’m a part of and wrote a long post explaining what was going on. I was desperate. I didn’t know what to do. We couldn’t go through all of it again, the birth and the surgeries and the NICU.

Within a couple of hours, someone responded to my post. She’d read about women with CF who had taken a new therapy called Trikafta and given birth to babies who were positive for CF yet had no physical symptoms. To put it in layman’s terms, in CF, the gene mutation causes a problem with the production of certain proteins. The three drugs in Trikafta interrupt that problem, which lessens the struggles CF patients have with thick, sticky mucus. The drug is approved for people ages 2 and older with certain CF mutations.

I wondered if it would make sense to take it while Nora was in utero. I was like, Oh my God, this could be something. But it’s not approved for people who don’t have CF — so I knew that getting on it wouldn’t be simple.

Still, I brought it up to our doctor, and she was intrigued. “I haven’t heard about this,” she said. “But it’s worth a try, isn’t it?” I contacted the Stanford CF team, and the specialists there agreed that I should try it. They wrote a ten-page letter to my insurance company to get them to approve it. I got approved right away.

On taking Trikafta

I started at 24 weeks — two pills in the morning, one in the evening — and stayed on it until my delivery day. I had no side effects.

A week after I started taking Trikafta, I had an ultrasound. Every other week for six weeks before that, Nora’s bowel blockage had been getting bigger. But at this ultrasound, the dilation seemed to have stopped. The next week, same thing. My doctor and I couldn’t believe it.

By the time of my 32-week MRI, the blockage was totally gone. The radiologist had seen the blockage at 29 weeks in a first MRI and he was flabbergasted by the new results. He called me and said, “I’ve never seen one disappear on its own. But it’s gone.” He said that when I delivered, he wanted someone to page him so he could be the one to do the X-rays and other tests to confirm.

On delivering a healthy baby

I had Nora via C-section; my placenta was abrupting and I was bleeding, so they rushed to get her out. They let me have a little bit of time with her, and then the neonatologists and the CF team took her away for monitoring for four days. They didn’t know what to expect. They’d never seen anything like this.

But Nora was perfect. They took X-rays and CT scans of her bowel and couldn’t find anything wrong with it. They watched for poop, to make sure her bowels were moving. Everything was fine.

I don’t know if I can describe my relief. I cried and cried and cried, but this time, happy tears. I went back on my CF page and wrote to everybody to tell them what happened, to make sure other women could see it. The whole point of us sharing information is so other parents know, and can get help for their kids. It was so exciting.

Nora and I were released from the hospital on the same day; she was discharged in the morning and I was discharged in the afternoon. She got discharged before I did! She was a breastfed baby. They had me stay on the medication until Nora was about 8 months old. At that point she was eating solids and only nursing twice a day, and her doctors figured she’d be better off starting on an oral medication and getting a stronger dose. Until recently, Trikafta was only approved for children ages 6 and up. But there was a similar, two-drug therapy that had one of the Trikafta components in it that Nora could take. It comes in powder form, and we give it to her with applesauce.

On getting her other children on Trikafta

We got the boys approved to start on the drug this past summer. They’d both been admitted to the hospital — Jaxon for pneumonia, and Elijah for a severe respiratory infection. Jaxon’s infection was so severe he needed a tube placed in his chest to get fluid out of one of his lungs. We were petrified.

Trikafta got approved for use in children ages 2 and up this spring. Jaxon started taking it in the hospital, and Elijah started on it after he was discharged. It’s only been a few months, but I think it’s working. They tend to get sick in the fall and winter, but they haven’t been as sick as they usually get and they’ve been gaining weight better. I usually give them Miralax daily to help regulate their bowels, but I’ve been able to cut back on their doses without any issue.

On raising her children today

I’ve been a stay-at-home mom since the CF diagnosis. It isn’t easy. We’ve been through a lot. Hospital admissions are especially scary and hard. I’m usually a hopeful, confident person, but I’m not as confident or hopeful during those times. Since he was born, Jaxon, who is 5 now, has had a number of bowel blockages, and at 8 months old, Elijah ended up needing emergency surgery. He’s 3 now, and we’re still terrified. If it happens once, it can happen again.

My kids can also get really sick really fast from even basic colds. During COVID, when Elijah was still a tiny baby, we were very much the family that did not leave the house. I’ve still never had COVID, and our kids haven’t either.

Kids with CF need breathing treatments twice a day to help them clear the mucus in their lungs — they call it chest physical therapy. There are different ways to do it. To do it by hand, you cup your hand and sort of tap it against their back in sections. It takes forever, so now we use these vests, which sort of mimic the tapping. The treatment lasts 30 minutes. The kids also get treatments through a nebulizer, which is kind of like an inhaler, except you put it over your nose and mouth. All three of them get treatments at the same time. I put their vests on and they watch their shows on the couch until it’s over.

But for the most part, the kids have progressed and done so well. Nora will turn 2 in March, and she’s had a much easier time than her brothers did at her age; no surgeries, not as much difficulty gaining weight. She’s definitely been healthier than they were when they were really little.

So much has changed in the CF world already, even since Jaxon was born. I still spend a lot of time on the CF boards; it gives me purpose and makes me feel like I’m making a difference. Dealing with a new CF diagnosis is overwhelming. I just keep telling moms, “Keep the faith. Things are changing and better treatments are coming.” I helped a mom in Scotland recently who was asking about Trikafta. She needed grants to get it; the national insurance program wouldn’t approve it. I think I’ve helped more than 20 people on that board alone get through the approval process, so they could take Trikafta during pregnancy. All of them went on to have straightforward deliveries. Their babies didn’t have complications.

Sometimes I think about what would’ve happened if we did IVF; what our lives would have looked like. But I know that these are the children we were meant to have. They’re the strongest little kids I’ve ever met.

I wouldn’t change any of them.

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The Mom Who Had Three Babies with Cystic Fibrosis